Patti about Ehlers-Danlos Syndrome and ADHD as well as medical gaslighting, mental health misdiagnoses, and growing up with an undiagnosed illness.
Listen on: Apple Podcasts | Google Podcasts | Spotify | Stitcher | RSS
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
First off, here’s a quick reminder that if you’re enjoying this show and also have a few bucks to share each month then you can become a patron over at patreon.com/NoEndInSight.
This week I’m talking to Patti about Ehlers-Danlos Syndrome and ADHD as well as medical gaslighting, mental health misdiagnoses, and growing up with an undiagnosed illness.
I want to put a few content notes on this episode. Patti does briefly talk about a few in-patient psych experiences, though these are usually in passing as part of a larger story. And one of those stories is a suicide attempt and her experiences immediately afterwards. If this is something you want to skip entirely, then I’d jump ahead about seven minutes when Patti starts talking about her recurring pancreatitis. After that story she starts talking about looking for a new therapist and her interest in Jungian analysis. So if that’s what you hear when you jump ahead, you should be in the clear.
Before we start, here’s my disclaimer:
This podcast is not intended as a substitute for professional medical advice, diagnosis or treatment. Make sure you talk to your practitioner about any questions or symptoms.
Brianne: I like to start by asking people, how was your health when you were a kid?
Patti: Awful. What I now know as of four weeks ago, that I think I may have emailed you about because in the initial email I hadn’t had a centralizing diagnosis. I had a lot of descriptive diagnoses, and those are different. Fibromyalgia is a description. It is not an explanation.
Brianne: And were they thinking about that when you were much, much younger?
Patti: No. I am 60 years old, so when I was much, much younger, nobody listened to kids. It was all, “You’re whining. You’re attention seeking. You’re making it up. You just don’t want to go to school.” All those things. Additionally, I had a really traumatic, violent alcoholism childhood. So there was the alcoholic secret keeping… I describe my childhood as a kind of Tim Burton movie. It was very dark, but yet it also had it’s very interesting moments. And so, later on when I became independent enough to see a doctor or psychologist for myself, and I would say, “You know what? I feel lousy all the time.” And it was like, “Oh, it’s because of that.” And that was pretty much… one version or another of that was what I was told right up until I got the diagnosis of Ehlers-Danlos.
Brianne: Okay. And so much of that is like the template stuff that is so frustrating.
Patti: Yeah. Now as we know, trauma can certainly cause all this, and it certainly added to mine, but it turns out, in my case, it’s genetic. So there was also… what the geneticist said to me was, “It’s kind of moot by now, but I really want you to check out fetal alcohol syndrome and see if some of those things when you were a little bitty baby…” Because I was the fourth child. My mother was older and of course she smoked and drank like crazy because I was born in 1959 and she was 37.
Brianne: Right. It was not on the radar the same way that it is now.
Patti: No, not at all. And things were, like I said, being the fourth kid and things had gotten pretty bad with my parents even then. My dad left right after I was born, pretty much. So there was all that, not just smoking and drinking, but all the fighting, all the epigenetic trauma and stuff. So I was born a little bit early. I was teased terribly by my siblings for my entire life about looking like a prune when I was born because I was four pounds and a few ounces. And they didn’t have neonatal care, nothing. I was just sent home. So my health was… I was often described as frail or sickly. All the things they used to… so many diagnoses, even today and words we use are, and even so much of the DSM is character assassination.
Brianne: Yes, like personal failings rather than biological problems.
Patti: Right. Like I had a choice at one day old of being sickly and frail.
Brianne: Yes. You are not trying hard enough as an infant at that time.
Patti: Three months old or three years old or 13 years old… so I felt lousy from the time I can remember being old enough. And I was equally very, very, very intelligent as a kid. I learned to read really early. I was very verbal to myself. I didn’t have a lot to say to other people. And partly because I was introverted even then, partly because I kind of thought, “Well, what’s the point? I just get teased or something,” but I had a very verbal imagination even when I was very young. And I remember being like six years old and climbing a tree in my grandmother’s backyard, and it just wearing me out. I remember not… I was raised in Texas and so I always hated heat and sun. I remember it wasn’t just that I was hot, I felt nauseous. When I was really young, I would throw up a lot. I didn’t want to eat very much. And that was chalked up to again a personal failing or not liking food or something. And when you’re that age, you just don’t have the… as verbal as I was, I still did not have the capacity to articulate that. And even when I did, it was dismissed, so I stopped like most kids. This was true of parents. It was true of siblings. And let me back up. I’m not blaming my mom because she really was… a whole other conversation is how amazing she actually was. And she really did her best, and she took me to the doctor and stuff. So it was more like it was dismissed by the doctors, not by her.
Brianne: Right. And then everybody’s learning. Like the doctor says it’s not a big deal, so that must mean it’s not a big deal. And then everyone else starts responding that way.
Patti: People back then and parents was, “Don’t coddle. Don’t…” so she’s trying her best. I remember no matter who I told I felt lousy, just nobody attended. I don’t know whether they didn’t believe me, or if it was too much trouble or if it was just…
Brianne: And there’s, I think, a real difficulty with kids trying to express this. As you mentioned already, that can be difficult to articulate, but it’s also like you don’t know what other people’s bodies really feel like, so you don’t know if maybe everyone feels this way and you’re the only one who can kind of not do it and you don’t know. There’s so many levels that make it really difficult to communicate about this stuff when you’re learning about it in a vacuum. And then even more so when you’re a kid and you rely on other people so much.
Patti: Especially when you’re in physical pain a lot, or you’re nauseous a lot, or you’re kind of lightheaded a lot. What I did recognize and realize is that I don’t like to play like other kids. I wanted to like it, but I couldn’t. I couldn’t run around like other kids. I couldn’t do those things. And that was just true forever. I was, like almost all kids with EDS, I was very clumsy and klutzy because my proprioception was off, so I fell a lot and I had two or three concussionsbe cause I hit my head real badly. And, of course also with EDS, we now know the bruising issue is a huge factor, so I had these terrible bruises all the time. I’m very fortunate that no one ever said, “Are you being beaten?” Because I wasn’t. There was not that kind of physical violence at all. It was emotional and psychological, but only when my mom was really inebriated and stuff. So very interestingly, the thought about curing this or whatever was to get me into things like gymnastics and ballet.
Brianne: Flexibility stuff.
Patti: So I started ballet when I was nine years old, and I was initially really talented. I was in fact one of the first scholarship students to the New York City Julliard School of Ballet.
Brianne: Wow. Yeah.
Patti: Yeah. I didn’t like ballet. I wanted to learn to play classical piano, but it was… I had exhibited some talent, so my teachers immediately attached onto that. It was hugely exploitative. I don’t know if it still is that way. I think much less so, but back then it was… I was one of the tickets to get the school recognized and there were several of us. The problem was I didn’t have great balance. And, I had some other talents and skills, great musicality. I wanted to play classical piano. And I can jump real well. And I was obviously super flexible and so forth, but for things like adagio work, which is what it’s called in ballet, slow, beautiful, balance work, I was just never that great. And as I got older, that became significantly problematic. So even though I got scholarships to study with Juilliard and so forth, I didn’t… two things happened. One, I was 13 to 16, so I went through puberty, which means I stopped growing up and I got a little bit of a figure. I weighed 90 pounds and was still told I was fat because I didn’t match Balanchine’s anima projection basically is what it was. Secondly, I no longer looked the part. Thirdly, I just couldn’t… as EDS progressed and stuff, my proprioception got worse and I just couldn’t… and I started having to wear… I’ve had to wear glasses since I was six, but I just couldn’t see it all, so I had to wear hard contacts. Because of EDS, my eyes are shaped funny and I can’t wear soft contacts. Plus, I don’t think they existed back then, but also because of EDS, everything’s so sensitive, so it was miserable.
Brianne: And of course, you didn’t know it was because of EDS at that time.
Patti: No, I just put them in for class and took them out right after. So, all kinds of things were beginning to interfere and what my teacher saw and what the School of American Ballet saw was somebody who just kind of peaked and then went… so when I was 16, I lost my scholarship and they didn’t have me back anymore, which would have been fine had I been a normal kid and had a normal childhood. But I was also out of high school. I had graduated early because I thought I was going to have a career in dance because no one told me any differently. I was an emancipated minor by then, so there I was at 16 with literally nothing to do. All this time just hurting and hurting. Also, the fourth reason was my back started just… even though I was super flexible, I also have a little bit of scoliosis and a little bit of other back issues. Again, my mother smoked and drank, and I wasn’t born with all the parts. So my mom took me to a zillion doctors. They gave me a zillion tests, couldn’t find… couldn’t really get a definite kind of thing. And that began my low back hurts forever saga.
Brianne: And were you mostly looking at the back stuff with doctors or are you trying to kind of list whatever you knew to name and see if anyone knew how to put pieces together?
Patti: They diagnosed me with an ulcer when I was 13 because I was throwing up all the time.
Patti: And I didn’t have an ulcer. I also had school change issues and a lot of other psychological stuff. And along with all this, of course, there’s the sensitivity issues. I was sensitive to light. I was sensitive to sun. I hated bright sun. I still do. But ballet teaches you stoicism. I learned immediately never to complain. I also was told, “If you don’t hurt after every class, you’re not working hard enough,” direct quote.
Brianne: I was just going to say there’s a real culture of pain, isn’t there?
Patti: Yes. So from that cultural perspective, I kind of fit in.
Patti: And I was like, “Okay, well this is just normal. Everyone feels this way.”
Brianne: And sort of everyone did, but…
Patti: Not like this and not for the same reasons. Everybody’s feet hurt. But not everyone had neuropathy since they were three. Not everyone got nauseous when they did turns. And the really funny thing was I was really good at jumping and turning and that was the thing that I just… I was nauseous 24/7 for a decade or more until I stopped dancing. So it was kind of this mishmash of all these things. I had horrible GI issues, which again my mom took me to a couple of doctors, and then the doctors were saying, “Oh, it’s probably ballet and dah, dah, dah, dah, dah, dah.” So it was like everybody blaming everything else. And at the same time, because I was a girl and because this was the ’60s and it was in Texas and it was in the middle of patriarchy, my chances of having anyone listen to me were zero, and actually take it in and actually think, “Oh, maybe this isn’t normal. Maybe we should look for some causes, or at least look for some treatment. Look for some symptom help.”
Brianne: Yes. Yeah. Like quality of life management.
Patti: Yeah. But the symptom help was, “Don’t complain. Be grateful. It could be worse. Buck up.”
Brianne: Yeah. Just stop talking about the symptoms and then it will be like they’re gone. So you’ve been going to doctors, you said, this is after Julliard.
Patti: Yeah, I think I even went to one of their doctors for the back thing. And I had all those horrible torture tests, as I call them. And by this time, they realize that… I remember having one of those tests and being told, “Well, you have really sensitive nerves.” Okay. I don’t even know what that meant.
Brianne: Yeah. It’s not totally clear even now what that means.
Patti: Yeah. And so I just kind of did the best… I was always a loner. I never had friends really because friends play, that’s usually what you do. And there was certainly no internet. And I was boring. I was also really smart. I always had my nose in a book because reading didn’t hurt, one of the reasons. It was also a good escape and fantasy, the usual reasons. I remember at the same time, I was an excellent student and I hated going to school for all kinds of reasons. One of them being that it was physically just so painful. It was uncomfortable. Desks were uncomfortable. Doing anything was uncomfortable. PE was hell on earth. Because of proprioception, I have zero ball skills and that’s what they want you to do in PE. So they make you do something that I couldn’t do. It was like, “I’m not not trying to catch the ball. I just can’t. I just can’t see it.” I have extreme aural capacity. I have very sensitive hearing. Apparently that’s kind of a thing with EDS because the lack of collagen, and I read an article on it and now I can’t remember why, but apparently it’s not that unusual. And so noises always bothered me. So I was always trying to just find ways to manage and like all children like that I was resilient and I found all these ways to manage. The chief one being stop telling everybody how lousy you feel. So I learned like most children with chronic illness who were in those situations, and particularly if they’re my age or within within 20 years, you learn to just, especially if you’re a woman, you learn to shut up because you learn to shut up as a woman anyway in our culture and you really learn to shut up about that. And you learned to fake it. So I found ways, like most people, of learning to fake being okay.
Brianne: Yeah. Which is the opposite of what we are typically accused of, by the way.
Patti: Which is why I never really had a career. Took me six years to get through college, partly because I did have to work and I worked my way through. But also because I had to drop out of… I had two years where I literally started with four or five classes and dropped down to one or two or had to take incompletes in them. Now, at the same time, I kept getting awards in college. I majored in French. I kept getting awards for being this, that, and the other. I was inducted into the Phi Beta this and whatever. And I specifically… this was the 70s, I was specifically taking classes where attendance didn’t really matter. It was like getting to class, but just sitting in a class was just miserable.
Brianne: Yeah. And sometimes hours at a time. It’s not unusual for them to either be stacked together or for a once a week lecture to be three hours long. And something that I just remembered that I hate, that I’m going to throw in there is that some professors also feel disrespected if you fidget or if you change position or if you sit in an atypical position.
Patti: Especially where I was and especially when I was going to college.
Brianne: It is not set up for people who can’t do that.
Patti: And you certainly couldn’t get up and leave a lecture. Oh my God. I had professors who locked the door. And I didn’t understand why. I think the most painful part of my education was not understanding why if I were so damn smart and I was, and I knew I was… still today, I can synthesize material. I can learn it really quickly. I can understand it on a very deep level. I can pick up new content, all of those things that make someone intellectual and intelligent and loved it. To this day, I love intellectual pursuits. Why I couldn’t… why school wasn’t easier. Why I couldn’t make college… I couldn’t do the things other kids did. I’m talking about academically. I didn’t get internships and I couldn’t follow through with things. And I did, I thought it was just a character flaw as opposed to, “I’m just not trying hard enough.” And I also worked 35-40 hours a week in hospitals because that was the job I could get, and I was good at it, and I could do the hours and stuff. I think partly I was drawn to medicine because I was comfortable about being around people who felt like crap. And I kind of wanted to learn. I thought, “Well, maybe I’ll learn something that will help.” So this continued and continued, and I was just never okay. And then when I was 22, I started having horrible dysmenorrhea, and at 23, I had hysterectomy.
Brianne: Okay. You went right for the source of the pain.
Patti: It wasn’t really my choice. Again, I was in Texas in a patriarchal culture, in a first marriage that was very bad and very narcissistic controlling, and had no female support systems at all. And I was told by the doc, “Well, we don’t really know what’s wrong, but we can fix it if you have a hysterectomy. And of course it’ll mean you can have children.” And the person I was married to at the time was very much in favor of that. So no one… I literally didn’t have anyone say, “You’re kind of young for this. There might be some other options. This might have something to do…” well, it turns out this dysmenorrhea pain of that magnitude… I lost a job because of it. I tanked it on a job cause of pain.
Brianne: Yeah. It’s no joke.
Patti: So, I thought, “Fine. Maybe that’ll be the cure for everything.” And you go through that. Maybe this will be the cure for everything. Maybe this is the problem. Maybe this will be the cure for everything. Maybe this is… So, it was the cure for dysmenorrhea.
Brianne: Sure. I mean if you have a painfuly cycle, and you get rid of that cycle. Something that just really strikes me is something that my mom used to say, and she used to work in a hospital, and she was like, “A lot of sexist doctors out there will say that your uterus is only good for two things for making cancer and making babies, so if you don’t want a baby and also you don’t want cancer, then a hysterectomy is a great option.” And I don’t think we hear that as often anymore, but I’m sure region by region and doctor by doctor there’s a lot of different perspectives out there. And that’s, like you say, it’s very patriarchal.
Patti: This was in 1983 so, you know.
Brianne: Yeah. Which would have been her time in hospital, basically.
Patti: Yeah. And it was in a really small town because I was living in a really small college town where I was going to school. So, eventually got out of school and had always worked anyway and always worked admin jobs, and so I just kept doing that, one crappy job after another. I longed for a career. I longed to go back to graduate school, which I tried to do several times and a combination of an ex-husband who kept getting different jobs and we moved around a lot and my health made it impossible for me to do that. I eventually did, about a decade ago, get a master’s degree. But back then there was no internet. There was no… the only path was a university, and you go to classes and you TA.
Brianne: It’s very work intensive. I mean, graduate school is work intensive no matter what, but when there’s no flexibility at all and you need flexibility, that’s kind of it.
Patti: Yeah. And there was just nothing there. So by the time we’d moved… lots of things look like good ideas when you’re 21, getting married looked like one. And my health was just always poor. And I always faked it being well, always. And for a while you can kind of brute force things.
Brianne: Yeah. Especially in your 20s, typically.
Patti: I had no social life. And then I started, because it began to be the late eighties and early nineties and medically guess what we were discovering? We were discovering brain chemistry. So the trendy diagnoses, especially for women who either everything from felt lousy to weren’t living up to their potential to whatever, began to be mental health diagnoses. So for 12 years, I started getting mental health diagnoses, and I got just about everyone you can get except for schizophrenia. And I got the medication for all of them. And more than once, I was put in a lockup ward in a psych hospital for no reason. I have never been… I’ve never had a manic episode in my life and I was diagnosed as bipolar. And again, married to someone who… this kind of went along with that. But it doesn’t have to. I mean, women, that was our fate, right?
Brianne: It happens to a lot of people. And it’s complicated because also mental health conditions, of course, can be comorbid with physical health conditions, but it’s a huge problem the misdiagnosis thing.
Patti: Yeah. And I had depression. I was deeply, unhappily married. I had a childhood that essentially gave me PTSD. I now had PTSD from being chronically ill and hospitals. So, yeah. And anxiety, which apparently is also an EDS thing. As my geneticists explained it to me, connective tissue affects everything, and one of the things it really affects is your ability for your brain to… your brain gets in these cycles of fight or flight or freeze, even if you’re perfectly fine…. and that’s what part of POTS is, it’s part of the dysautonomia. So he said, “Your autonomic system is broken and has been since you were born, so all of these things looked like something else.” So I was put on massive medications. I just made a list of them for the doc that I’m seeing now. And every anti-depressant, practically every class, a few anti-psychotics that they just kind of threw in there, a lot of these were mixed. I remember at one point I was taking 12 pills a day.
Brianne: That was going to be my question. This was all getting layered on top of each other rather than let’s try one, let’s try one, let’s try one?
Patti: Yeah. I had ECT twice. Two massive rounds of electroconvulsive therapy for depression, which did not work because I did have that kind of depression. And after the second one, I kind of saw the writing on the wall, and I just pretended it did.
Brianne: Yeah. It’s all good. Got to go. Thanks.
Patti: Yep. I even pretended to have short term memory loss so that they would never do it again.
Brianne: Yeah. Yeah. Which like something is very broken in this whole system when that is the amount of autonomy that patients feel like they have.
Patti: Yeah. I pretended that I couldn’t remember that we had bought a new car.
Brianne: Yeah. Not happening.
Patti: No, I had no short term memory loss at all. And I was by then beginning to recognize, “Okay, how do I get out of this fucking loop?” So, a few more years of this, and by now it didn’t matter what I complained of, it was mental illness.
Brianne: Right. And that’s in your chart at that point, I would imagine, so doctors…
Patti: Oh, the chart was like this big.
Patti: And back then, those records weren’t yours.
Brianne: They were like a paper folder that they passed around.
Patti: Well, yeah, it was this big. I’m not kidding because I saw it. Yeah. But also they… you didn’t… today, we own our medical records, but oh my, no. So you could never correct anything. You could never add an addendum. You could never…
Brianne: Which people do still have problems with electronic health records, but we have such a access now.
Patti: Yeah. So, it was just, again, everything was, “You have manic depression.” And every time they came out with a new DSM, they tweaked it. And I remember asking a doc, I said, “Okay, so I’ve never had a manic episode in my life. How do you know?”
Brianne: Yeah, why would this be manic depression and/or bipolar and/or whatever it evolved into. Yeah.
Patti: And they said, ” Well, you just haven’t recognized them.”
Patti: And they also were listening to people other than me who did not have my best interest at heart, because again, before HIPAA… people complain about HIPAA, but back then they could actually ask your spouse without your permission and take that as legitimate. So finally, by this time I’m in my late thirties, and I have begun to find a voice and started just saying no to mediations that clearly weren’t helping.
Brianne: And did any of them help, did you find, for anything? No. None of it was making it any better.
Patti: I think at one point for really bad situational depression, I had some SSRI, and it helped a little.
Brianne: But that wasn’t the underlying issue, so improving your brain chemistry didn’t improve your collagen.
Patti: No. And I’m not saying I haven’t had depression. I have. It’s just that the antidepressants have never really worked for me. So I’m also still exercising like a fiend because of course what do you do when you can’t dance anymore? You go and do yoga.
Brianne: Another flexibility activity, as a side note.
Patti: And I also did a lot of bicycling, which I loved. And at the same time that exercise just wore me out… and I also started running and thinking I never had the endurance. Like I could never build the endurance that people could. And, I wondered about that a lot actually. I thought, “Why is this? They train and they build enough endurance to do things. And I’m like, nope.” But nonetheless, exercise was still the thing that kept me sane and kept me going and was certainly the best antidote to depression and anxiety and all of that. It was also a time I could be alone. I never exercised with anybody and hated it. I hated bicycling with other people. It was an alone thing. So, I think part of it was probably being alone and part of it was the actual physical. It was one time when I had some autonomy. I could stop. If I’m bicycling by myself and I got tired, I could just stop, and I did. I also bicycled really slowly. I walked up hills.
Brianne: You have a lot more control over it than you do… a lot of exercises are group activities or sports with balls, as you were talking about earlier.
Patti: Yeah. And even by that time in yoga classes, I was old enough to say, “Don’t try and manipulate me.” Basically, I started telling people, “Just keep your hands off. Just don’t.”
Brianne: No adjustments. Don’t touch.
Patti: And, “If I can’t do something, just leave me alone.” And I will say yoga was kind of getting… they were okay with that. And, they’ve certainly gotten much better at it, but they were definitely okay with my… because I was older than, or the same age as some of the yoga teachers and so I could… I would just set-up in the back of the room and stop. But nonetheless, yoga is… yoga and running are hugely contraindicated for EDS.
Patti: Now probably not all yoga, but the kind I was doing. I was doing super like… because again I was good at it and it felt good. That’s the weirdest thing about EDS or hypermobile things. It’s like a lot of us complain like, “Well, now we’re not supposed to stretch, but it feels good because our muscles get tight, so what do we do if we don’t…” Actually, I’m kind of trying to figure this out. Same thing with running, I never got a runners high, but it made me feel strong. I was never going to run a… I couldn’t… I could run three miles at my top best without… and it was jogging. It wasn’t running. I never ran. I jogged or what I call “wog,” walked jog, but it made me feel strong. I just fell in love with it. There’s something very primal about running. It’s very different from walking. It’s very different from cycling. And, it’s just very primal. And so, I’m kind of doing this. And eventually I wind up in… I was in California for most of this time on the west coast, Seattle. I moved from Texas to Seattle and then up and down the west coast. Also, I’m beginning to understand that weather really affects me. I loved Seattle. I never once got depressed. I love dark atmospheric English… I adored winters. I loved the rain. Still to this day, it’s my favorite environment. I feel better. Now, I understand that I’m not making it up when I say, “Wow, sunlight really hurts. It makes me get vertigo and things like that.” And then we moved. Like I said, my former husband was in IT very early and it was really, really, really, really, really common to job hop like six months here, six months there, and I think that’s still the case in some ways, but it was really common back then. So now we were in Seattle, and then we were Silicon Valley, and then we were in Idaho for a bit, and then we were in Seattle, and then we went to Silicon Valley, and then we were another part of Silicon Valley. So we moved like 20 times. And so yeah, that’s kind of traumatizing. We never owned a house. We never owned anything. It was always apartments and stuff.
Brianne: And community, which I guess we talked about before this started, but community is not… you can’t build a community that quickly.
Patti: And also that wasn’t his interest. And every time I did get some community on my own, that was one of the… narcissist don’t like that. So, we’re in Santa Cruz and then in San Jose for a bit, and then he takes job in of all places Richmond, Virginia. The worst place for my health you could possibly imagine. It’s hot, humid. I’m also having tons of histamine reactions by this time. Everey allergist I see says, “Get the allergy tests. You’re not allergic to anything.” By this time the autonomic stuff was just like I turn red real easy, I get hot, and all of this. Thank God benadryl became over the counter by then.
Brianne: Was it mostly hives kind of stuff or swelling kind of stuff or something completely different?
Patti: It was like certain parts of my body would just get real red, especially my ears. It still happens. People thought I was flushing a lot and I’m like, “No, I’m not. It’s just like I’m…”
Brianne: Uncomfortable heat, some kind of reaction.
Patti: Like heat just rises up and if I were a comic book character, it would be my superpower that I can somehow make things get on fire.
Brianne: Yeah. Yeah. You’re creating heat in these very random parts of your body in reaction to something.
Patti: Yeah. So, and the histamine thing with humidity, it’s beyond miserable and my whole body by this time also is… I always had really sensitive skin, and by then it’s just like I’d already recognize that… I remember being in… because I had office jobs. I was a paralegal, I was medical person, I was office manager. And I was really, really, really, really good. I was like Miss lemon, and I kind of began to specialize because we moved so much. I got paid like shit and never got anything, but I could always get a job within a week. Until the crash of 2008, I’ve never not been able to get a job within a week. And, I kind of wound up with a specialty of going into places where they had massive admin chaos because either they would go through admins every three weeks to three months or just there was… so I kind of developed this specialty of being able to go in and get everything organized and put systems into place. And, so whether that was a law office, whether it was… it kinda didn’t matter, but it wasn’t a career. It wasn’t anything I enjoyed. It was lousy pay. I had no voice. People who know me now cannot believe that I had no social skills up until I was 40, and I mean like almost none. I certainly had social skills on a job.
Brianne: Right. But it’s a specific performance in that kind of environment.
Patti: And I’m not joking, I had zero friends, not just because we moved a lot, but because honestly I had been living around and with narcissists for a long time. There’s a family issue with that, so I was kind of well-trained to be that supply. So I was very good at that and literally didn’t know what an adult friendship looked like and didn’t know how to make them. As I say, people who know me now, or even like 10 years ago, when I would tell them that, their jaws would drop and they would just be like… even now when I tell people I’m a deep introvert, they’re like, “No you aren’t.” And I’m like, “Yes I am. We’re talking one-on-one or one-on-two. One more person shows up and you will see me shut down. Because to me, four people as a big party.”
Brianne: It’s a lot of information to parse. It takes up more cognitive space.
Patti: Yeah. And of course overstimulation is all a part of this. Being a highly sensitive person is all a part of this. Having aural issues is all… and there is that I always had to… it’s not a mental capacity issue or an incapacity, but it’s a brain… neuroatypical.
Patti: All the time, I’m also undiagnosed ADHD. Which because I had jobs where I had to multitask, and I mean literally my jobs were be in the middle of a sentence and literally have to stop and do something else, so I got very good at that and by the time I got home at six o’clock, I was dead. I couldn’t stand up, I couldn’t move, I couldn’t do anything. So, wound up divorced in Virginia, outside of Richmond within a year of moving there. I was 40, 41. I’d been married 20 years. Wound up with this. I also was having massive pancreatitis problems. I could not get the doctors to believe me that I wasn’t a private drunk drink at this point. It turns out that weird organ things are also partly EDS, partly just the enormous trauma of what I was going through. I was literally 100% alone. If I had hit my head in the bathtub, the only person who would have found me would have been the landlord after I didn’t pay my rent for three months. And people say, “How can that be?” And I’m telling you it was. That’s just how it was. So, again, I’m in and out of the hospital constantly for pancreatitis. Well, what did they do? They put you on fluids, no food, just fluids until your pancreas calms down. They didn’t try to figure out the problem. I’d also had two other surgeries by this time. I’d had the gallbladder taken out, I’d had appendicitis. I’d had all kinds of shit.
Brianne: Weird, isolated incidents that start to look less isolated when you have such a history of them.
Patti: So, and again, they are chalking all of them up to mental illness. Somehow I’m making my pancreas misbehave.
Brianne: Classic pancreas stuff.
Patti: So, I am at this point, it’s bad, and I’m in just constant pain. And I decide that life’s just not worth living anymore, and I make a suicide attempt. And I, very strangely to this day, succeed for a little bit because I remember my last breath going and I remember how relieving that was. I was like, “Oh God, thank God.” And I remember I had an out of body experience, and there’s a whole long other story of why and how that didn’t last. That is how I wound up in a lockup psych ward. And, again, I’m smart. I’m observant. I’m real aware that, a, this should have worked. I took enough stuff that with any… and I also had been so skinny, I weighed 92 pounds at this point, and I’m a full adult. Okay. No reason. And they didn’t pump my stomach, so there’s no reason I should be alive. And I am, and I’m pissed off. My first reaction is, “Fuck.” My second reaction is, “This is embarrassing. I can’t even do this right.” My third reaction is, “How do I get out of here?” So, back then lockup psych ward was really bad. I had no clothes. I was wearing somebody’s old sweats. I was kind of a ward of the state.
Brianne: Right. I don’t know the right word, but I know what you mean. Yeah. You didn’t have your own autonomy basically. You couldn’t choose to leave.
Patti: No. And I didn’t have a guardian because I’m 41. So I fortunately had a really stupid psychiatrist, who said… she was from India, I remember that. And, she said, “All you need is a little job and a little boyfriend, and you will be fine.”
Brianne: Oh, wow.
Patti: Okay. Little cultural problem here. Completely didn’t want to know anything about the divorce or the fact that I had no money or… just no social worker. No case worker offered. Nothing. This is a major city. By the way, all this time, my medical records are just… so, by law back then, they could only keep you I think four days without a judge ordering. So I realize I have to start looking really capable really fast. So I go to all the… and the way they do this is they say you have to come to all the group things. So I went to group things. I was very verbal. Also, I’ve had therapy on and off since I was 20 years old. I know this. This wasn’t hard for me to like, “Okay, what are the words I need to…” And, there was also psychology magazines lying around.
Brianne: Yeah. You know what they’re looking for and what they’re evaluating.
Patti: I knew exactly what they were looking for. I also knew that this was a one time thing. This didn’t work, and I don’t know why it didn’t work, but clearly… I should say I chose pills because I’ve been in enough physical pain… a, I’d never owned a gun, b, I wouldn’t know how to get one, c, I didn’t even have money to get one, even if I needed one, d, I just thought it’s messy. There’s part of me that was trying to make it easy on people. It’s Messy. What if I fuck it up? Then I’m just gonna be… and all I could think of was that sounds painful. Same thing with knives. Same thing with… to this day, I can’t even… I know people hang themselves. But none of those were options for me because I’d been in enough physical pain, and I’m not going to choose a painful way. And all of those things sound painful. I wanted to go to sleep. I didn’t want to stop living. I wanted to stop being in the body that I was in, and that’s different. I wanted to stop being in so much goddamn physical pain 24/7 with no hope of it getting better. So, but when you tried to tell them that, it was like, “No, no, no. This is…” So I gave them what they wanted. You have to sign a contract, you have to name three people whom you will call.
Patti: I named people from Pride and Prejudice way before the book had gotten popular and there were any movies.
Brianne: Yeah. You weren’t worried that someone was going to catch it.
Patti: I named Liz Bennet.
Brianne: That’s the casual version.
Patti: I named Bill Darcy, and I named… oh, who was the other… the sister or the friend. Yeah. So, I made up places where these people lived and worked. And one of them was out of state, and one of them was an old college friend. And I wrote this beautiful piece, and I wrote about how I was at my lowest ebb, and clearly I have a lot to live for, and I have a lot to contribute. And so within three days I was released. I had to take a cab back to my apartment. I realized that I really do need to talk to somebody, obviously, because I had been seeing psychiatrist, or not psychiatrist, but psychologists all this time, and most of them are really lousy. I saw two good therapists and then the rest were just crappy because a lot of people are bad at their jobs and a lot of therapists are really bad at their jobs. And I had begun to get interested in Jungian psychology, very interested in it because it really… I got the soul piece and I thought, “Yeah, this makes total sense to me.” And I was very, very fortunate. I found a Jungian analyst that had one opening on Tuesdays at 1:00 PM, and I saw him for six years and in that time got a life together again. Got remarried, and so forth. So by that time, all of that piece had gotten much better. My physical health never improved.
Brianne: Right. And, it doesn’t sound like… almost, why would it? I don’t mean that glibly.
Patti: In fact, it began to get worse because I’m aging, I’m still doing things that are really bad for EDS.
Brianne: Right. But you don’t know, of course.
Patti: Which I don’t know. I’m less able to, as I say, brute force. By this time, the orthopedic stuff, which is all my back stuff, I have huge diagnoses of like… This is my orthopedic diagnoses alone. I have spondylosis. They actually diagnosed me with chronic regional pain syndrome, spondylosis with neck, spondylosis in cervical, spondylosis in thoracic, fibromyalgia, muscle spasm. So all this is getting much, much, much worse. Partly because the jobs are… now there’s computers, now there’s tons of repetitive motion, so I have horrible cervical radiculopathy at this point. And so I’m feeling worse and worse. The fatigue is unbelievable. Spiritually, I’m good. And mentally, I’m good. And I’m thinking, “Why do I…” My husband and I didn’t travel much or anything. I’m still unable to…the fatigue is just… so I’m sort of chalking it up… by now I’m 45, 46, 47. I’m chalking it up to like, “Well, okay, I’m older and I had a tough life and all those other things.” And by now, it’s early menopause. The IBS is awful. The one diagnosis I did get is restless leg syndrome, and I’m finally put on some carbidopa-levodopa for that, which really did help. So at least it helped me sleep. But I had insomnia my entire life, that’s not improved even though everybody’s looking, saying, “Oh well, but you feel good, right?” And of course I looked great.
Brianne: And everybody’s been telling you that all of this is caused by your mental health problems, and you finally feel like you’re addressing your mental health, it sounds like, and this stuff isn’t changing.
Patti: Yeah. It’s getting worse.
Brianne: Yeah. Ah, that’s its own… like part of the harm that’s done is how disorienting that is.
Patti: Yeah. It’s kind of gaslighting.
Patti: Beause now I’m a menopausal woman, and so now the only answer I get for 10 years is it’s menopause and I am not kidding.
Brianne: Yeah. All of it.
Patti: All of it. All of it’s menopause. They don’t bother looking for blood work. They don’t… nothing. So my husband and I, by this time, moved. We’ve left Richmond and we’ve moved to Vermont, and I’m gloriously happy in Vermont. You know, it’s like my halldark town. I call it halldark because nothing’s hallmark. But I just adore the place we live. I feel finally like I fit in. I have tons of friends. We have a huge community. We’re really happy. We actually got to retire early. I’m working a little at the local co-op.
Brianne: Good stuff is happening.
Patti: Oh God, yeah. Life is great. And I feel worse and worse and worse and worse and worse. So I try the usual, “Maybe it’s gluten, maybe it’s dairy.”
Brianne: Oh yeah, the usual suspects.
Patti: Yeah. And of course everybody says, “Well, have you tried yoga?” And I’m like… by now I’m teaching yoga, subbing for a couple of people. And it’s like, “Yeah, I don’t think that’s it.”
Brianne: I have tried it.
Patti: Yeah, you name it, I’ve tried it. So, the doctors up in Vermont, about four years after we’re living up there…. five years… no, about six years… okay, I love winter. I don’t ski. I don’t… but I love winter. I love snow. And I learned to knit, so I’m a huge fiber artist at this point. I knit and crochet all the time. That’s part of the community up there. I help out in in a yarn shop. A friend of mine owns one. That’s how I met our friend. So, and nothing is better. Not the IBS, not the constipation, nothing. And in fact, all that was getting worse. Plus by now the fatigue is just like over the top and huge brain fog and they keep putting me on various… every time there’s a new antidepressant come out, they put me on it, and I’m fine with that. I’m like, “Sure. Worth a try.” And you feel like such a bad patient because you go back and you say, “This doesn’t work.” You feel… imposter complex is a huge part of this because as a chronic professional patient, you feel both like an impostor human being…
Brianne: Right. Because you’re faking all the time in your regular life.
Patti: And you feel like an imposter patient because something must be wrong with you because you’re not improving or you’re not doing the things that you’re supposed to be doing. And the shame, the second guessing yourself… now fortunately, a lot of therapy… one of the benefits of being smart is that you learn fast. And by now I had done an MA in psychology and actually had planned to become a Jungian analyst because I have a lot of gifts for it, but I can’t because my physical health won’t let me now. I actually can’t go to the Jungian Institute in New York or Boston and stay overnight. It’s so hard to explain this even to my husband. It’s like, “Why can’t you?” And it’s just like, “I can’t.” Nobody understands that I can’t. And, it was so frustrating. So, I still do not understand… at this point in life, I still don’t understand why I have no energy and everybody else seems to… including my husband who’s nine years older than me and goes to gym three times a week and chops wood.
Brianne: Age isn’t explaining it.
Patti: So I can’t figure it out. So I began to feel really bad suddenly. And one of the strange things is my bones begin to hurt. Like on top of every other pain, I tell people, I feel like my bones are going to crack. The doctors in Vermont said to me, “Well, it’s menopause and depression and it’s also Vermont. A lot of people your age, they just can’t take the winters and so you just need to leave.” Okay. My husband and I are just crushed. Neither of us wants to leave. We adore it. I’m feeling huge shame like, “God, I’ve got to make us move.”
Brianne: We’re both upending our whole lives on the hope that doing that…
Patti: They don’t say, “I’m going to send you for a consult at Dartmouth-Hitchcock.” And I oddly just hadn’t found my voice yet. Like I hadn’t learned to maneuver inside this because the last thing I have ever thought is that I’m part of a chronic illness community.
Brianne: Yeah, yeah. I didn’t know the extent to which it existed.
Patti: Yup. And I kept lying basically by saying, “No, I’m not in chronic pain.” I remember finally the doctor that I have here…. so I said, “Well, I’m not in chronic pain.” She says, “When was the last time you didn’t hurt?” And I said, “I think like at seven years old.” And she just looks at me and she says, “You hurt all the time?” And I said, “Well, yeah.” She said, “That’s chronic pain, Patty.” She actually had to tell me that. She said, “Most people don’t feel like that.” And I said, “Are you sure?” And she said, “Yeah, most…” she said, “I’m 40. I have three kids, young boys, and I have a lot of energy. And I’ve been through… I don’t feel like that.” So we move. We moved to Asheville. My husband’s a musician. Asheville’s a great town. Nothing against it. We couldn’t move to the west coast. I would have preferred to move to the Pacific Northwest where I actually know from doing some traveling that I just generally feel better. But a combination of money and my husband really… I knew if I was going to do this, I’d have to put him someplace where there’s a huge music scene. We’ve been here five and a half years. The huge music scene, that’s great, but we moved here and nine months later, I still feel like shit. In fact, I feel worse. I spend two and a half years here, going from doctor to doctor. I finally find my current doctor whose a direct primary care. She takes one look at my blood work and in 10 seconds says, “I don’t know what else is going on, but I can’t tell you that you have hyperparathyroidism, and you have to go to Tampa and get an operation.”
Brianne: Wow. That’s news.
Patti: All this time, my calcium has been going up, and I keep telling them that. I keep telling them one of my sisters had this too. It’s menopause and depression in Vermont. I’m not kidding. That was actually what the diagnosis was.
Brianne: Yeah. Very medical.
Patti: So in 2017, I go to Tampa and I had the operation, and my bones stopped hurting, like the deep bone pain. That really does make you feel like… and Carly and I think, “Oh, the fatigue’s going to lift. The depression…” because hyperparathyroidism, when you have too much calcium in your blood stream, it really screws you up. It mimics a ton of other stuff including depression and fatigue and chronic fatigue. And we’re just really happy. And six months later, the only thing that’s improved is the bone pain.
Patti: So she says, “Okay, we’re just going to peel this back like an onion.” And it takes a year and a half of her, first of all being interested in, secondly, it’s private… it is direct primary care. So I pay her and then she has… I have insurance, but it’s like a $7,000 private deductible. So it doesn’t…
Brianne: It takes time to get that in just appointments. Imaging is what costs that much.
Patti: Yeah. Naturally, after all this, all of my blood tests are normal. So she says, “Well, right now I’m going to say you have chronic fatigue.” And we know that I have the Epstein Barr virus because I had mano twice when I was a kid. It actually really never left my system, she says. I had it once… both times I had of drop out of college for it. So she knows that, and we’re learning more and more and so we keep peeling back. So she says, “Well, I just can’t make any headway on this chronic pain and the fatigue, so I’m going to do two things.” She sent me to a pain specialist who finally addresses the back pain. I get RFA and tried it in my neck. Tried to have the set of injections in my neck, and unfortunately it just didn’t work. But for low back, first time… I’m 60 years old. I’ve had this for 55 years. First time I get relief. Second thing, I keep telling her, “My hips just really hurt and it’s mostly on my left side.” First time ever she sends me for imaging, I have to have a hip operation for arthroscopy because I have a tear and I have a bunch of other stuff.
Brianne: A bunch of physical things that anyone could have seen if they had ordered the tests.
Patti: And I begged my previous doctor to order an MRI because you can’t see it on x-ray, you wouldn’t. So the first thing Carly does is order that, and again, we get it back and we’re all excited because Carly and I keep thinking, “We found the thing. We found the thing.” And yet it took a year and a half for me to heal from this. It normally takes six to nine months. My wonderful orthopedist is like, “I don’t understand this. The operation went well. I can show you that you don’t have any arthritis in this hip. Everything is perfect. I don’t understand why. You’re doing PT. You’re doing everything right.” He’s just like, “I’m out of ideas.”
Brianne: Yeah. Like, this shouldn’t be happening.
Patti: Yeah. And he’s really frustrated, and he’s just saying, “You’re my best patient. I don’t understand why.” So, I finally healed, but along with it… I’ve always had bursitis, and now I have it really badly. So, we figured that out so I can get bursitis shots, which again, do help. But by now, I am bedridden. I spent a year and a half housebound, couchbound, and bedbound. If I got out once a week,that was a lot.
Brianne: And primarily from the surgery and healing or not healing from the surgery?
Patti: Well, just even when I… even when that healed, the fatigue.
Brianne: Yeah. Just everything.
Patti: And so now I’m reading everything I can about chronic fatigue because Carly says like, “This is a weird thing. You’re not experiencing some of this because you have those moments where you’re really better, and you don’t seem to have post exertional malaise in the same way, which is kind of the big metric.” I mean, I have it, but not like people describe it. And, she’s just, “I’ve seen bad cases of fibromyalgia, but I think a bunch of things have come together and it’s just like a perfect storm of hell for you.” So we’re trying to deal with it with some meds. So she says, “I want you to try one more thing for chronic pain.” So I get ketamine infusions, back in February, two and a half weeks of almost every other day. This is an intense therapy. The people that like it, I think, are people that like being high.
Brianne: Mmm. Is that how I felt?
Patti: Oh, it’s more than that. It’s kind of like LSD. So two and a half weeks, I’ve never felt better. And I noticed immediately that there’s a huge change mentally. And until my EDS, ketamine doc… by the way, all of this is off the books. We’re paying out of pocket for all this.
Brianne: Right it’s all experimental. Like you can’t make a case to insurance. Yeah. Yeah.
Patti: We’re very fortunate we can afford it. But for about a month, I thought I was cured.
Brianne: So it’s an intensive process. And then do you keep doing them for maintenance, in theory?
Brianne: Okay. Yeah. So they really felt like they were working, it sounds like.
Patti: It helped with pain and also for the first time in my life, I haven’t been depressed. I mean, I’m almost euphoric because it’s like, “Oh, this is what it’s like to not have to push against something depressive all the time.” I’m so used to this, my brain kind of not working well or working as perhaps most people’s who don’t have trauma or whatever. The 10 people in the world that applies to now. And I told people, I said, “This is a fucking cure.”
Brianne: It’s incredible.
Patti: And then, now we know how ketamine works. It temporarily repairs your synapses. The problem is it’s temporary, which is why you have to have maintenance. So the fatigue and the pain just come roaring back but not the depression. I was like holding for the depression, and so my doc gives me some nasal spray maintenance, and I go in for a couple of maintenance treatments. It’s helped 90% still for the depression. The maintenance treatments don’t do that much. And so I can’t afford to have something that doesn’t do that much. It’s pretty hard in the body. And depression for me isn’t… the other thing is I’m so high functioning. I get out of bed. I get dressed. I take showers. I don’t present that way. I present the way my… all this time I’ve had no creative life. I’ve written several novels and couldn’t get them done enough to get a publisher.
Brianne: Right. Or they can be like executive function stuff where some things are easy and some stuff just isn’t working.
Patti: I stopped sewing. I stopped knitting. I stopped crocheting. So that part’s great. Again, it’s like, “Yay. Oh God. Okay.” So at this point, this summer, Carly says, “I’m sending you to a geneticist.”
Brianne: Yeah, let’s see what’s happening. What they can tell us.
Patti: She said, “Because first of all, we can get you there now.” Because you have to fill out a 25 page history to even get there. There are so few of them. They don’t, by any means, take every referral. You really have to prove to them that you have done everything else. So I fill out the 25 pages of paper work and send it in, and I don’t hear from them. I don’t hear from them. And Carly contacted me one day and says, “They said they never got the paperwork.” And I’m like, “Oh, hell.” So I fill it out again. This time send it by registered mail. Finally get an appointment. It was a six month wait. A month ago, I go in to see the geneticist, and he says… he talks to me… it’s a two plus hour appointment,
Brianne: Which almost never happens.
Patti: That’s the way they work. It’s a very different medical thing. I’ve never, ever, ever had, except for Carly, who’s direct primary care and therefore our appointments can be 45 minutes, I’ve never had anyone talk to me like that. I’ve never had anyone ask me those kinds of questions. He read the whole 25 page thing. I mean, he’s there. I can see his notes on it. And he says, “So I need to examine you, but from all of this, this is what I believe you have.” And he said, “I’m not going to ask you to pay the gagillion dollars for an actual DNA test.” He said, “At this point, it’s kind of useless. You don’t have one of the really serious kinds because you’d be dead.” I don’t have vascular EDS. I’d be dead. And he says, “So, it’s likely hypermobile, and there’s no genetic test for that yet.” And he said, “And even if it isn’t, it kind of doesn’t matter, Patti.” He said, “But I’m 98% sure it’s hypermobile.” He explains to me… he literally starts at the top and says, “This is how this affects your brain chemistry. This is why you have POTS. This is how this affects this. This is why you have brain fog. This is why you had to have a hysterectomy. This is why you’ve had rectal prolapse. This is why you’ve had all those other internal organs. This is why you’re fatigued.” And literally he said, “Collagen is the most common protein in the body.” And he said, “Basically, if you have a house built out of plastic or wet cardboard, and every part of the house is built like that…” he said, “That’s what you’ve got.” And I have a history of making it worse. He said, “Wish I could tell you it’s different, but I see a lot of people your age.” And he said, “It’s like usually your health goes off a cliff, totally, around 55 or so.” And it’s exactly what happened to me when we moved. Like I could brute force. I could kind of fake it. I’d never been bedridden in my life. I’d never been so fatigued that I couldn’t get up and go to the bathroom. So, a, it’s enormously validating, b, it’s hugely relieving, c, I’m pissed as hell that no one else… because he said, “This isn’t a new thing anymore. It used to be.” He said, “I wish I could say that I didn’t see women who kept getting told it’s menopause and depression, but I have, a lot.” And so he does the physical exam, and of course the physical exam is totally positive.
Brianne: The Beighton score stuff?
Patti: That and striae that I’ve had. Unexplained striae, stretch marks on breasts and hips that just appeared when I was about 12 years olds. They appeared pre-puberty and literally it’s almost an overnight thing. It wasn’t weight gain. It wasn’t weight loss. The bruising thing, the not being able to heal real well, all my scars are weird… we have very white scars that are depressed and they’re white. And even the one from the hysterectomy, it’s still like that and I had it in 1983. This one in my chin is like that, and I got that when I was seven. So, eye issues… my glasses change every year. I have migraine headaches easily. The sunlight thing… he said, “Because it affects everything.” But the physical exam is the Beighton score and several other things that they do.
Brianne: Like your skin… I was pulling on my cheek because as if that’s exactly what was happening.
Patti: Actually, he does it like here.
Brianne: Yeah, on your arm. But looking at all that stuff like stretchy skin, velvety skin, et cetera, et cetera.
Patti: So he gives me this diagnosis and a whole packet of information. And I’ve known about EDS. I’m actually the one who said to my doc, “So, I don’t know if I have this, but if I do, it certainly explains kind of everything.” And that’s when she said, “Well, I’ve tried everything else, so yeah, I’m going to send you to a geneticist.”
Brianne: Yeah, let’s go check it out.
Patti: And the thing is, it’s hard to get a diagnosis of this because… now, my geneticist says somehow it got dumped in their lap, and he is trying to educate young doctors to be comfortable making a diagnosis. And he said it’s like hitting his head against a brick wall.
Brianne: Especially with hypermobile, since, as you already said, there’s no genetic test for it, so there’s no reason that the geneticist would be the person that you need to go to.
Patti: And Ehlers and Danlos were dermatologists. So I’m also seeing a dermatologist by now because I grew up in Texas and so I have some skin cancer. So I go to my dermatologist a couple of days ago to get a couple more things done, and he looks at me, and he says, “I’m so glad you got this diagnosis because I was going to suggest you go.” He said, “Just looking at your scars and your skin alone.”
Brianne: Yeah. Wow.
Patti: Hearing a little bit about… he said, “And I’ve only gotten just the minimal history from you, but just looking at that, I was going to refer you.” So third thing… I know this tale should end right there. There’s a Coda. Through all of this, Carly, my PCP, has prescribed… I get pain med from the pain doctor, which is a whole other issue and a weird thing. I get treatment from that. It’s about a 50% to 60% improvement in back pain. You know what pain is like. That’s huge. That’s the difference between being able to do something and not. I get bursitis shots from the orthopedist just because he’s cheaper and he does them better, and that helps a lot. All of this stuff lasts about six to nine months. And then I have to… and all of that… the RFA costs about $3,500 $3,000. So through just kind of trying to find things that work… it turns out I’m allergic to Gabapentin. Of course I am. So I can’t take that. It makes me suicidal.
Brianne: I was going to say, because Gabapentin has, I think for a lot of people, some very difficult side effects, including suicidal ideation.
Patti: Suicidal within 24 hours. Guess what I was on when… yeah.
Brianne: Which wouldn’t it be great to have known that?
Patti: Yup. And it’s one of the things that I just stopped taking on my own because I was like, “I just don’t want to take medicine anymore.” So I went through some hellish withdrawal, some things that I probably should have stepped down, but I was so… But yeah, guess what I was on for about three years, so yay for me for even being able to hold out that long.
Brianne: Right, right. That’s a long time for something that is that disruptive.
Patti: This time I recognize the that I want to die, and she’s just tried Gabapentin again. And I’m like, “Oh, okay.” Google, okay… and within 24 hours, it’s gone.
Brianne: Right. And this is one of those things where the internet makes such a difference. I know that some doctors will tell you not to Google things, but it can be really difficult to recognize when something like that happens that you didn’t feel that way before. It can take weeks to go, “I didn’t use to feel like this.” And so being able to quickly identify what’s going on is really important.
Patti: Yeah. Looking up side effects of… because I was aware of it because I love therapy and I’m extremely… I have a very good observant ego. That’s what that’s called in psychobabble. I’s called an observing ego. You can step back and look at what the eye is doing and feeling and thinking. So, I’m aware that this is really strong. I’m also aware that I wasn’t feeling like this 24 hours ago. And I think, “What’s new? What’s new? Oh, the Gabapentin’s new.” So I quickly, I just literally… I say, “side effects of Gabapentin,” and of course it comes up, and I’m like, “Well, we’re not taking that anymore.” And it was gone in 24 hours, but among all this stuff I also was taking Cymbalta because that’s what they give you for fibromyalgia. It just didn’t help. I was on it for three and a half years. It’s just not helping. So I’m finally just about off of it. I stepped it down. Carly and I decided to just get off it, so I stepped it down like six weeks by 20 milligrams. So I’m now on 20 milligrams every other day. And so in about two more weeks, it’ll be done. So meanwhile, about a year ago, she says, “Well, at least I can treat the chronic fatigue for a little bit. I’m going to try you on some methylphenidate. You may hate it. It may make you all wonky. You may not feel good.” So she gives me this super low dose, and it’s like the difference between I have four hours of productivity or I have none.
Brianne: That’s a big difference.
Patti: Yeah. No, it gives me a four hour window.
Brianne: I know that having a four hour window is one of those things that to a person who doesn’t know about productivity windows it sounds sad maybe, but from nothing to four is a huge jump.
Patti: Oh, it’s enormous.
Brianne: Yeah. Bodies are weird.
Patti: So I’m telling her this and I also… again, because I can talk to her, because I email her, because she’s direct primary care… not concierge, but just direct primary care. So I’m emailing her and I’m saying, “By the way, I could be imagining this, but it seems like my focus is really good when I’m on this stuff. Because I know what it is. I know that they give it to kids for this, but would it have this effect if…”
Patti: And she says, “No.” So she said, “Okay.” So, but in order for me to get it because it’s scheduled… she could still prescribe it, but she doesn’t want to. So I’ve now filled out another 25 page packet for a psychiatrist. She says, “Because I actually think you were undiagnosed ADHD.” She said, “It would not have this effect.” There are things like it doesn’t keep me up. If I take it at seven at night, does not keep me awake at all.
Brianne: Right. Because it’s a stimulant, right? At it’s core?
Patti: It’s dopamine. It works the dopamine receptors. Same thing with RLS. When I’m taking it, I have to take less of my carbidopa-levodopa, which is… it’s the same mechanism. It’s the same dopamine pathway and receptor stuff. So, I don’t have the appointment. I just filled out the paperwork, and I have to drop it by her office today. Again, somebody out of network, charges like $350 an hour because that’s what she charges. And, but at least I’ll get a real dialogue and a conversation and stuff. Needless to say, after my traumatic experience with the psychiatrist years ago, I’m… Carly knew this, and she said, “No, no, no. I send my kids to this…” She has a kid who… she said, “I would send my child to this person. This is a really, really good person.” So, and she is. I talked to her. But so apparently, I have EDS and ADHD, and the methylphenidate gives me the four hour window. It also amplifies my pain medication. I have no idea why. There’s some research says it shouldn’t really do that, but it does. So I now have this cocktail of half a Tramadol, two Tylenol, an ibuprofen and the methylphenidate, and if I take that at like nine in the morning, I can actually get something done until about three. And so I sort of have this nine to three life again. And then I’m done. And by six o’clock at night, I’m in just huge pain because one of the problems is the pain isn’t controlled well enough with Tramadol. So I have to talk to my pain doc again next week about what we’re going to do about this. And meanwhile, I have to get all this up to Vermont and probably Dartmouth-Hitchcock or Boston in the meanwhile. Yeah, so this my story of… I know I’ve been talking a long time, and you can edit this as you want… why diagnoses are important.
Brianne: Yeah, yeah. Big time.
Patti: Why correct diagnoses are important. It never was menopause and depression. It never was manic depression. It was certainly not anything like border line or psychosis. It was never malingering. It was never attention seeking. It was never, “I’m just klutzy.” It was never any of that. It was never, “Oh, she’s just a frail child.” It was never, “She’s not trying hard enough.” It was never…
Patti: Diagnoses are important.
Brianne: Yeah. And getting told all that stuff is damaging.
Patti: Oh, it’s hugely… people actually do have PTSD from being chronically ill and this fucking chase. This has been… you’re probably familiar with the myth of Odysseus. This is the Odysseus myth. This is actually kind of you get stuck on the island with the sirens, and then…
Brianne: Yeah, it’s just like an endless sea of almost distractions and just obstacles.
Patti: Yeah. And then you finally get home and you find out that your wife is… the scuttlebutt is that your wife has been sleeping with someone else. Now that’s not true it turns out with Penelope, but then it’s like you think it’s going to end when you get home. And that’s what I thought with finally the EDS diagnosis. And then it’s like, “Oh, but apparently you also have this.” So here I am stepping into the third period of my life. I probably only have another 25 good years. At least I hope they’re even good. And it’s like I’m finally on. I finally have correct diagnoses, biological diagnoses. They finally have diagnosed my back issues. As my doc said, “Yeah, your channels are really small, and we can see this. This is why we’re having to do this very painful, very expensive RFA.” And other stuff and neck and other stuff… I finally have a diagnosis of EDS, which explains why I’m in splints, and joint pain, and can’t sleep at night, and POTS, and nausea, and clutziness, and everything else. And ADHD, which kind of explains why no matter how hard I tried… it kind of worked in my benefit for awhile, but when it stopped, it really stopped.
Brianne: Because it’s like the hyper-focus can be a really good thing when you’re chronically ill because it’s a way to pull out of your body. But it’s not like a super power where you can hyper-focus on command, so if you’re not doing that, it’s not working.
Patti: Brain fog… and plus it presents differently in girls and women. It presents very differently. Can I do all of this stuff without this medication? Yes, I can. I’ve also done 20 years of really intense neuroplasticity training and meditation and stuff. But I am just demanding an absence of so much struggle now. And it’s not even a request. It’s a demand. There are ways to make me not have to struggle every single day to this extent. Methylphenidate is one. Pain control is another.
Patti: So, I demand to live the next 25-30 years of my life without being Sisyphus, without pushing the Boulder up the hill only to have it fall back every day. And even with all that, people don’t get it, it’s still hard. I’ve been in bed all week because I had this procedure, and it just took it out of me. It was only really painful for the first day, but physically it’s like I just. I can’t get out and drive to the store today.
Brianne: Yeah, yeah, not happening. Or maybe you can force yourself to do it, but there are going to be consequences and those consequences are not worth whatever it is.
Patti: And I’m aging, so it is… diagnoses are important. I think that’s why EDS says… a lot of medicos are taught if you hear hoofbeats behind you, think horses. Well, what if it’s zebras? And so, so many in the chronic illness community, first of all EDS…as the genetics explained it, he said, “It just takes someone with… we all had to get a big enough focus, like a big enough telescope to say… because otherwise how do you possibly connect velvety skin, easy bruising, nausea, and POTS? That doesn’t…”
Brianne: Right. And they’re not things that you… I understand why it can be missed when nobody’s looking for it. Because as a patient, they’re not things that you’re going to just bring up randomly because you might never have realized that that’s what they were called or that they weren’t normal. And so there’s also this problem of the way that we communicate about our experiences is not universal, and so a doctor who isn’t explicitly looking for it… I don’t blame them for not seeing it. Although I have questions systemically, which I think is what you’re talking about, about how this information is shared. Yeah.
Patti: Yeah, I can understand that they missed it certainly 40 years ago, 30 years ago, 20 years ago. 10 years ago when they just… they also missed hyperparathyroidism, which is right there in my blood work and a hip problem, which is right there on an MRI. So, they’re unwillingness to even send me, their assumption… and this is a weird thing, Brianne, I am white. I am middle class, upper middle class. I present well. I am height-weight proportional, as they call it, i.e. I’m slender.
Brianne: No one’s telling you to lose weight when you show up to these appointments.
Patti: Yeah, I look fit. I smile. I’m fairly cheerful. I’m extremely articulate. I can go through my history. There’s family history. And yet, just because I got put into the mental health and then the menopause and mental health slot and just because quote, “Well, if there were anything wrong, people would have found it by now.”
Brianne: Yeah. Which yeah, I have questions about that logic.
Patti: And I had the resources to when they said, “Well, your insurance won’t cover it.” And I kept saying, “It’s okay. I’ll pay for the MRI.”
Brianne: Right. Having that option is also, not everyone has it. Yeah.
Patti: If it took me this, imagine the trauma that people are going through and have gone through. And I know because I’m on support boards, just like you are. I have to imagine I hear the stories. But then there’s the whole group of nonwhite people who simply are… if you’re a person of color, and I knew this from working in hospitals, if you’re a person of color and you present in pain, you’re screwed. And, you’re really screwed now.
Brianne: Yeah, with the war on opiods.
Patti: Beause your pain isn’t taked seriously, and it’s not taken as seriously if you’re a woman. And if you’re a woman of color, you might as well… But so, diagnoses matter. The right diagnoses matter. And my story is at once horrifically not that unusual.
Patti: As even the geneticists said, he said, “Man, I wish I could tell you this was really unusual, and I didn’t hear this all the time, but you’re kind of in the middle of the bell curve with this kind of a story.” He said, “You’re a little older.” So it’s at once, not at all unusual, and on the other hand gets missed by otherwise well intentioned people.
Brianne: Generally speaking, yeah, I totally agree.
Patti: So clearly, our system for recognizing trauma in all its manifestations is it deeply broken, for appreciating that I’m not the only person who wound up suicidal from a drug. It’s really common. Did that get put in my chart? Nope.
Brianne: Right. And was that your after care as well? Were there questions about the drugs that you were on? Was there an effort made to tackle that? Yeah, because I mean that whole piece where you were talking about that…
Patti: Because now there would be. Now there is. People have now gone the other way and it’s like, “Well do you really need all these medications?” And I’m like, “Yes.” I also had, in the midst of this, because when I was young there was no vaccine for chicken pox, so on my honeymoon to Steve a day after our marriage… I must’ve been exposed a couple weeks earlier to a child with chicken pox, and I had… so now I also have to take an immunosuppressant or a viral suppressant because I have HHV in my… I have that virus.
Brianne: Did you get shingles?
Patti: No, I got full blown adult chickenpox and almost had to be hospitalized. And the only reason they didn’t was because it was just Steve and me, and he had already had it. And I was quarantined in my house for six weeks, and it was utterly… it’s very dangerous. I had spiked fevers of 105, and it’s very dangerous. That was even missed. The first doc I went to said, “You can’t have this. Adults don’t get it.” And I’m like, “Yes, they do.” And when I went to my regular doc, she was out of town, she said, “This is actually medical malpractice, and you should think about suing.” And I’m like, “I just have to think about like getting well.” But you know, in the midst of all of that… and again, I’m the last person that you think this would happen to.
Patti: So that’s my chronic illness story. That’s my why diagnoses matter story.
Brianne: Yeah. And they do. And something that really, really strikes me about just when you were saying about being in the middle of the bell curve is what the geneticist had said is like, it’s not just that so many people are sick for so long without that being acknowledged, not even without a diagnosis, because a separate but related problem I think is that there isn’t any acknowledgement…
Patti: Yeah, they’re not going to look for a diagnosis if they don’t acknowledge that you’re ill.
Brianne: Yeah. And so there’s… like culturally we don’t even acknowledge that you could be sick without a diagnosis. There’s no… nowhere. That’s not talked about. I think most people don’t realize that. Even people who are sick don’t realize that. And then on top of that, if you in the middle of the bell curve for this, that means that you have probably met personally a lot of other people who have had that experience. And no one is making that connection for the most part. And I mean, maybe you have met people and connected it. But so if a lot of people are going through this, it stands to reason that we all met a lot of people who have been through a version of this. And again, I think it’s because you don’t know until the end that that’s what was happening.
Patti: Thank God for the support boards. There’s a support board on Ravelry that kind of put me on the right path for a lot of this. Because let’s face it, it’s crowdsourcing.
Brianne: Yeah. Oh, yeah.
Patti: That’s exactly what it is. It’s crowdsourcing. And doctors don’t like to talk about it, but they’re beginning to do it. There’s actually a crowdsourcing kind of among doctors now where they’re sharing the most difficult cases worldwide to try and get some diagnosis. Or, yeah, I had somebody… and middle of nowhere Africa will say, “I actually had a patient like that.” But the rest of us, it’s crowdsourcing. Can it lead to people kind of wanting to be a part of the group? Have I seen that? Yes, I have. I’ve actually know someone personally who claimed to have a bunch of things and it turned out they didn’t have anything because of loneliness. But, for most people, that’s not the issue. 98% of us are sharing now on these boards and stories and stuff. And it’s a damn good thing because without it, I wouldn’t know some of the life hacks. I wouldn’t have been able to get splints, which are actually helping my knees and my wrist. I wouldn’t have said to my doc, “So, is it possible that I have this hypermobile thing?” Interestingly, my doc was also a professional ballet dancer, but she’s not hypermobile, which is interesting, which is one of the reasons that she went into medicine. And it’s not a bad thing. And like you said, a lot of docs, they’ll say, “Don’t look on the internet.” I’m like, “Honey, the internet probably saved my life.”
Brianne: Definitely. And my wellbeing. So even if it didn’t point me in the right direction to figure out how to talk to doctors, it helps me learn how to talk about this with other people, and that is hugely valuable.
Patti: Yes. And opens the door to… it’s part of the whole me too movement. It’s like, “Oh yes, that…”
Brianne: The gaslighting, acknowledging it.
Patti: “I had that experience too, and here’s what I did.” Or, “here’s how I talk to my doctor.” Or, “this is what I brought in and this really helped.” And, that’s how I went from not advocating for myself to being assertive, sometimes aggressive, like really pushing back when I need to, just refusing to take no for an answer anymore in a year.
Brianne: Yeah, because you realized the harm that it had been doing.
Patti: Yeah. And once I realized that for me I could kind of flip a switch and it was, “Oh. Oh, so this is what that is.” And, a lot of us have that experience because we had to assert in other ways, and so it’s like, “Oh, okay. You can just…” And I’m like a huge advocate for this now. I really want to, once we get moved and settled, I really want to get involved in the EDS Society as a patient advocate.
Brianne: They’ve had a lot of controversy lately that I don’t know a lot about, but I can tell you, I’ve seen a lot of people talking about it.
Patti: Oh, have they? The actual society?
Brianne: Yes. This is probably an off-show thing to talk about because I just don’t know enough about it to say it, but I can…
Patti: The one that has the conferences?
Brianne: I believe so, like the main organization that sets the diagnostic criteria.
Patti: Oh, them. Yeah.
Brianne: Yeah, the EDS society.
Brianne: But the point, the takeaway from that that I would say now is that I think a lot of people in the EDS community who are very frustrated with whatever’s going on, which again I’m not trying to be vague about it on purpose, I just don’t know enough about it to speak accurately, but I do know that I’ve seen a lot of people who are like hungering for more advocacy and good advocacy because some people are feeling really frustrated.
Patti: Yeah. I think I know what you’re talking about. But yeah, I want to be a patient advocate. I want to advocate for funding. The geneticist said, “There’s a big umbrella and a lot of things are underneath it. And it’s kind of like putting a flower in a certain genus or family, and eventually we’re going to find out that that particular flower kind of belongs to something else, even though it looks identical. Even though this looks like a Daisy and acts like a Daisy, it’s not a Daisy. It goes over in this other family. And that doesn’t mean that the treatment will be any different or whatever.” Because he thinks there’s an autoimmune… especially for hypermobility, he thinks there’s a huge autoimmune component to it.
Brianne: Which would make sense because a lot of people feel like it was triggered at some point. Like they didn’t have the exact same symptoms since birth. They had a moment where things got much worse.
Patti: Yeah. I don’t think people are aware of how much toxicity we have, by which I don’t mean just emotional and psychological traumatizing. I mean, as the doc said, we’re exposed to a ton of toxins.
Brianne: Yeah. Yeah. But literally in our water.
Patti: Yeah. And he said, “Fortunately they’re beginning to recognize it and younger people, and that’s good.” But it’s… yeah. So, I’ve become… the sad part that I’m still dealing with… I told someone that I was just going through a lot of grief, and she said what so many people say, “Well, just don’t look back, look forward.” And I just don’t let people tell me that anymore, and I don’t let people talk to me. And I actually explain to them why that’s not helpful, why it’s not empathetic. I give them the Brene Brown video on empathy versus sympathy. I just push back way hard because I do have a right to grieve. I’m 60 years old. Even 10 years ago, I could have… and certainly 20 years ago, I could have had some different accommodations. I maybe could’ve gotten that PhD. I could have gotten some help with just symptom management. That would’ve been nice. So yeah, I have a right to grieve. Most of my life has been driven by and directed by this thing that is true that nobody recognized. I’m not 25. I’m 60. I’m 60, and I’ve been around the block a lot. I have a lot of skill sets. I have a lot of what in Buddhism is called why skill. I have a lot of capacities to move and manage that a lot of younger people don’t because they haven’t had 45 years of practice. So I want to bring a lot of that to a community and start figuring out, sometime next year after we move, how to help be a patient advocate, how to do some writing around this. My first piece is basically going to be this podcast – why diagnosis matter. It’s a huge thing.
Brianne: Yeah. It really is. And I’ve already said this, but it just blows my mind how the general public, which often we belong to before we actually come to realize that something might be wrong, has no idea. Has no idea how diagnosis actually works, which is something that I’ve written a bit about because I didn’t know. And it’s like, oh no, there’s this very recognizable stage where you’re sick and everyone’s telling you that you’re not, or you’re getting tests and they’re coming back normal and then you’ll get a few things identified, but they don’t make a bigger picture. And you could be living there for years or decades. Yeah, yeah, it happens…
Patti: Five and a half decades.
Brianne: … all the time, and we have no idea. And that’s a huge problem. Yeah. Yeah, I’m into it. I look forward to reading what you have to write about it.
Patti: Oh, thank you.
Thank you for listening to episode 64 of No End In Sight!
You can find me on instagram and twitter @bennessb. And you can find this show on instagram @no.end.in.sight.pod.
Don’t forget you can sign up to support the show over at patreon.com/noendinsight. Or, if you want to support the show but don’t have a few bucks to spare, I’d be just as grateful if you left a podcast review on Apple Podcasts/iTunes.
As usual, don’t forget that I have a small Facebook Group called Chronic Hustlers for people living with chronic conditions who are self employed. It’s quiet but growing, and you’ll even find a few podcast guests in the group.
And normally I’d plug my cross-stitch company here but the website is still offline for some reason that is probably easily fixable but I keep forgetting to check.