Hannah Forbes talks IBS, endometriosis, raynaud’s and PTSD.
Hi, I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
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Today I’m talking to Hannah Forbes about IBS, endometriosis, reynaud’s and PTSD.
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: So, I like to start by asking people, how was your health as a kid?
Hannah: Hmm. Well, I’ve always been a sick kid, right from birth, actually. I had a… I was born with hip dysplasia.
Hannah: So I was in a brace. I had no cartilage in… we assume it’s my right hip. The hospital actually throughout the records.
Brianne: Ooh. Yeah.
Hannah: Yeah. I’ve been trying to find those, but so I was in a brace. I’ve always had hip pain, and I was… always had stomach issues, allergies, seasonal allergies. So I’ve never been healthy. I was always in and out of the hospital. I could go on and on. I never actually got a single diagnosis besides tonsillitis.
Hannah: But I was like nine.
Brianne: Yeah, like a normal
Hannah: thing. Yeah. Normal thing, until I was 11 and then it was IBS and that… and I kept saying there’s… cause around that time, I started to get menstrual problems, and when I was 13, I kept saying, “There’s a problem here.” And then it turned into teenage years. And then it was, as most teenagers, clinical depression, general anxiety, and then just recently they realized, “Oh, you have endometriosis.”
Hannah: So yeah, and then I’ve also been diagnosed with PTSD recently too, due to medical trauma and family abuse. We can get into that, too, and then you know, there’s hypotension, hyperreflexia, what else? Secondary Raynaud’s phenomenon, adult-onset ADHD. There’s a lot.
Hannah: Yeah, the last year has been an insane… cause my health was gradually going down… in the last year finally a doctor listened to me saying, “Oh, this person not healthy.”
Brianne: Yeah. You kind of hit that critical mass.
Brianne: Okay. So yeah, I want to zoom in a little bit on the moments. So you said at 11 you were diagnosed with IBS, is that right?
Brianne: So up until that point, you had been in and out of the doctor’s office, but without any… without it going anywhere and were things… had things been kind of flaring on and off, so things also would appear to improve without an explanation because they were in a cycle? Also, I know you were young, you might not remember.
Hannah: Yeah, it was… sometimes it would be cyclical. A lot of times it was just gradual worsening as I got older, and then we also realized I have anaphylactic allergies too, and they would have been normal…. severe intolerances, but because they’re ignored for so long… but they’re only mild anaphylactic. It’s actually one of those kinds, you don’t need an EpiPen, which is kind of weird.
Brianne: Okay. And hopefully that’s good news?
Hannah: I don’t know. I have to carry one anyway. Yeah, that’s what I think triggered the IBS, is the allergies there.
Brianne: ,Yeah, and I guess that could… that makes as much sense as anything else. That your body didn’t like the food, and your body slowly developed other issues. I’m not a doctor, obviously.
Hannah: I have no idea. Bad genetics in general, too.
Brianne: Yeah, yeah, yeah, yeah, yeah. Okay. So 11, diagnosed with IBS and it’s also… even if… okay, right now you don’t know about the endo, even if the endo didn’t exist… I’ve heard from other people it’s also true that menstruation makes IBS worse. They don’t play together well anyway.
Hannah: No. They do not.
Brianne: Yeah. Okay. So around that time, so after first diagnosis, how was school going, or how was your social life going? All that normal life stuff?
Hannah: Well I was always close to my family, but my mother, just very briefly, she was emotionally… is emotionally abusive, so I was very overly dependent on her. I didn’t have many friends, but those friends I still have now, at 20. So I think just because we were so young when we were friends, so it’s just kind of like a…
Brianne: Yeah, they stood the test of time.
Hannah: Yeah. They stood test the time, but I was always in and out of school. Some days I would… some years on miss up to 40 days of school, but in general, I was actually an honor student all the way through.
Brianne: Okay. So, doing well around the body and attendance stuff.
Hannah: Doing well, yeah. I got blessed with a really nice district. A lot of them are either family friends or… a lot of teachers and stuff… family friends and they’re wonderful. I still talk to them. One of them is actually my boss right now, so that’s nice.
Brianne: Yeah, that sounds like it would make a huge difference.
Hannah: Oh yeah.
Brianne: Okay. And so yeah, so you’re doing well, and it sounds like your school districts didn’t have a truancy policy or they were able to make accommodations for missing school… cause I know some, some people will end up with… even that young, problems with their grades just because they’re not at school. Even if it’s explained.
Hannah: Well, it’s funny because with me, I was always a student… My teachers are trying to withhold the homework because I’d be out for like two or three weeks and I’m like, “I’m bored. I’m in the hospital. Give me something to do.” That’s what I was always like.
Brianne: Yeah. It’s funny, depending on what’s up with your body, when your brain is working, being sick is very boring.
Hannah: Yeah. The mental illness didn’t show up then, it came later.
Brianne: Yeah. Okay, so that’s kind of how things were starting. And then talk me through… what was the process like for the rest of it? Were new symptoms showing up or you were just able to identify them better as you got older?
Hannah: Honestly, it was a crash. It just, I was out of school for five weeks at one point, and that’s when they think that the endo showed up, when the allergies became anaphylactic with… when the depression, anxiety, whatever, they just hit the ground.
Brianne: Yeah. Just amped up.
Hannah: Nobody knew what was going on. Yeah. And it was just always IBS. That’s all it was. It wasn’t anything else.
Brianne: Yeah. They’re like, “We’ve given you a diagnosis, so whatever happens to your body, don’t worry about it.”
Brianne: Okay. And then… so you had said 13 is that next turning point. So that’s like the beginning of high school kind of?
Hannah: Sort of, yeah. Yep. But I left school, and then I started working, too. So, I’m actually in my old workplace right now.
Hannah: Yeah. So I’m trying to think. What was the question? I have memory problems too.
Brianne: Yeah, that’s okay. That’s super, super common for everybody. It’s like, “Ah, brain fog. I forgot exactly what I was saying.” I was just asking, was it around the time that you started high school that this kicked up a level?
Hannah: Yeah, it did kick up a level, but I missed less school then, too. So that was nice.
Brianne: And you started working, you were saying you were working part-time, I guess?
Hannah: No, I actually, up until last year, I would work 40 hour weeks. From the time I was about 14 to a almost 20.
Brianne: That is a lot on your body.
Hannah: Oh, yeah. Oh yeah. It’s a lot.
Brianne: And at the library, I can tell since you just said you’re at your workplace.
Hannah: Old workplace, yeah.
Brianne: So what were you doing?
Hannah: I was just a page. And then also I would… oh, I was a tutor, too. So it was a mix of different things. Yeah.
Hannah: Just moving books around or then helping kids. Sometimes I would go into a childcare. I used to work out of YMCA too. Various departments. Yep.
Brianne: And so how was that with everything going on with your body?
Hannah: I got blessed with really, really nice bosses. They were always super accommodating. If I needed to be in the office for a day, they were fine. And then when I worked at the YMCA, my boss, he actually had ulcerative colitis, cause I don’t… I’m actually unemployed at the moment. So he had ulcerative colitis, so he completely understood that whole thing. And around… so after I graduated high school, that’s when another crash happened.
Hannah: So he was very understanding when I had to leave there.
Brianne: Yeah. When you were like, “I just can’t physically do it.” Yeah.
Brianne: And so also, as all of this is unfolding… and every… I think everything that you’ve named so far doesn’t have, necessarily, one straightforward treatment option, right? There’s a few different things that may or may not help, kind of. So what was that part like?
Hannah: It was just… they relied on immunology injections. It was a lot of holistic stuff for a lot of years. They didn’t know what was going on, chiropractic, physical therapy. Then I also started developing joint pain, too. And massive fatigue issues to the point where I couldn’t stay awake for six, seven hours at a time, and luckily though, I had a car, so I would just go and sleep with the car for a while, but they actually think now that’s fibromyalgia, which is a not straightforward disease in itself either. And then everything else on top of it. Yeah.
Brianne: Right. It’s so hard with all of these things… I would say with a lot of mental health stuff, with a lot of syndromes with fibro and ME, where it’s just as possible that one day there will be a medical breakthrough where they find something that explains everything all at once, or that it will turn out that there are like 10 different explanations happening at the same time, and you’re just unlucky. That’s where we’re at with medicine right now.
Hannah: Oh yeah, I know.
Brianne: Yeah. That’s fresh. Yeah. So some… and what, with holistic stuff you mentioned, did you find anything that did make a difference on your quality of life?
Hannah: Not really. Magnesium supplements are magical. That’s about all I can give.
Brianne: And what does that help for you? It’s like muscles stuff?
Hannah: Yeah, it helps ease my muscle spasms, and then it helps me sleep better too, because I also have disrupted sleep cycles. Yeah.
Brianne: Yeah. It’s right in there with everything else.
Hannah: Oh, yeah.
Brianne: So you were working a lot and navigating all of this and still in school, it sounds like?
Hannah: Still in school.
Brianne: Yeah. Wow. That’s… stamina.
Hannah: Yeah. It was a lot. I think that probably resulted in my second crash once I was… second or third crash once I left high school, because at that time too, I ended up going up to like 50 hours a week too, before college started, and then I was also in a new relationship too, so that didn’t help.
Brianne: Yeah. You’re like, “I’m going to do everything.”
Hannah: Yeah. Why not?
Brianne: I have also been like that. I was just at a wedding in the town where I went to college, which is strange, but… and my husband was there with me, and I was just talking about it and I was like, “Yeah, this one semester, these are the four different jobs that I worked.” He was like, “Wait, when did… were you also going to class? What are you talking about?” I don’t know. Sometimes you just want to do everything, and you make it work.
Brianne: Yup. Okay. And then mixed in with all of this… cause you also mentioned the mental health stuff. So were you… I guess there’s, again, different options like trying medication or therapy or anything else?
Hannah: Well, my mother was very anti-medicine, which is weird for a disabled person. So I actually was never on antidepressants until recently cause I’m preparing to move to an apartment, so never on them till recently.
Brianne: The pressure to avoid them is really strong. I think in the culture, and especially when people in your family are like, “You don’t need them. You just need sunlight and exercise,” or whatever.
Hannah: Yup. Yup. So there’s that, and then there’s also the PTSD, so… due to medical trauma and everything, because I’ve had a few really horrible scares, especially the past couple of months. But other than that… it was always sort of like “No, I don’t have depression,” until I hit college or something, and I was like, “Oh wait, never mind, I do.” The anxiety, I always knew I had.
Brianne: And it is… I mean, so many people, when you’re navigating this physical health crisis, and there aren’t good explanations, and you don’t know how to predict what your body is going to do. It is so understandable that these things would become comorbid, that they would kind of all be occurring in one situation.
Hannah: Yeah, yeah.
Brianne: Yeah. Okay, so then college, it sounds like…
Brianne: How was that or how has that been?
Hannah: The first semester was really hard because everything was… my health was falling to pieces. I was still working 40 hours a week, and so that was… my ex-boyfriend and I, we were fighting and just what you do after a relationship. We’re good friends now, and I know he’s going to watch this, I apologize for mentioning him.
Brianne: You’re like, “There were some tense times.”
Hannah: There were some tense times, mostly my fault because of the PTSD. I didn’t know what was happening with my body. I was really scared. He was a saint. He just let me do whatever I needed to do. But classes wise, it was hard cause the accessibility office at the time, didn’t believe my illnesses. The director didn’t believe my illnesses.
Hannah: That was hard. Yeah. But I got lucky enough with teachers who.. and professors, who are like, “Okay, yeah, we’re all chronically ill too. We get it. ”
Brianne: Okay. So you were kind of able to get informal accommodations basically.
Hannah: Yeah, pretty much. But this coming year, there’s a new accessibility director, and everybody knows what’s going on, so we’re all good now. It’s gotta be okay. And then I’m also there for fewer classes too, which is nice. That finally got approved.
Hannah: It’s just the one hour commute that’s the problem, but that’ll change soon.
Brianne: Yeah. Oh yeah. You’re moving. Yeah. I believe that. So what… even if they’re informal, what accommodations have been the most helpful for you and at work, too?
Hannah: Work, I never really had any… it was mostly just the ability to leave without penalty. And then make up days too without penalty. And then a nice one is… cause I also have something called morning nausea. I’ve always had it… which is different than morning sickness. A lot of people don’t know that.
Brianne: Sure, Sounds similar.
Hannah: Sounds similar, is not. I am not pregnant.
Hannah: So being able to be at work or be at school at 10 or 11 in the morning instead of at 7 or 8. So that’s the most important accommodation, too, and then I’m working right now to get a handicap license, which should help tremendously too.
Brianne: Yeah. For parking and everything?
Hannah: Yeah. Yup. Yeah. And then, you also mentioned IBS. I know a lot of people who I’ve spoken to who have say, Crohn’s, I think I’ve actually… I’ve spoken to a bunch of people with Crohn’s and nobody with UC, but one of the things that many of them have talked about is even just being able to go to the bathroom whenever you need to, which can be a big problem in academic environments or a lot of work environments.
Brianne: They don’t… you have fixed bathroom breaks or whatever.
Hannah: It’s really weird. Yeah. I’ve luckily never run into a work environment or a school environment where they’re like, “No, you have to be in a certain… alloted times.”
Hannah: I don’t understand why some places have… try to mandate it. It’s weird.
Brianne: Yeah. It’s unnecessary. Okay. And so then you said the last year has been particularly, I’ll say tumultuous, it sounded like.
Hannah: Yeah. So I finally got into rheumatology cause my GP at the time didn’t… that was also a problem. My GP didn’t believe any of my symptoms, so I switched gastros. And she goes, “No, here are the specialists you need to go to.” So she forced that, thank God. And this rheumatologist… she’s supposed to be number one in my area, and she goes, “You have localized systematic scleroderma.” Which I dunno if you know that. It’s an autoimmune disease where the collagen in your body gradually hardens, becomes scar tissue, and it’s a really high death rate. You’re not expected to live long, and she’s like, “You will probably be dead by June.”
Brianne: Jesus. That’s really great bedside manner.
Hannah: Yeah. All because I had an ulcer because my Raynaud’s was completely out of control.
Hannah: I went to a scleroderma expert. He goes, “You don’t even have autoimmune antibodies. You’ve never even had them.”
Hannah: It’s incredibly rare to have autoimmune disease without those antibodies.
Brianne: Yeah. Without showing up on any blood tests or whatever.
Hannah: Yeah. Yeah. And I always have blood tests, so…
Brianne: Yeah. You would have known.
Hannah: Exactly. So. I don’t see her anymore.
Brianne: Yeah, no kidding.
Hannah: I see him.
Brianne: Yeah. Okay. So this guy who… was he also a rheumatologist, but who had specialized in scleroderma?
Hannah: Yeah, yeah, exactly. But the good news is that caused me to realize, “Okay, I need to get out of this home situation. I need to…” this was when my ex boyfriend… I… out of all people, you know, would call him at midnight, and we’re just good friends now. And then a couple other people in the family who I didn’t have a good relationship with, like, “I think I’m going to die can you be there for me?”
Hannah: And then it turns out, “Oh, I’m not, okay.”
Brianne: Yeah. You’re like, “That might have seemed dramatic, but it’s literally what someone told me, so…”
Brianne: What do you do with that information? Yeah, of course.
Hannah: Exactly, which… also that got me to therapy too, which is nice, and on an antidepressant. So, yeah.
Brianne: So this moment of life-threatening misdiagnosis also changed a lot in your mindset, it sounds like.
Hannah: It did. Yeah. Yeah. It just made me realize, “Okay, I can’t wait for anything right now because I might not be here next year.”
Brianne: Yeah, yeah. That’s huge. I’m sorry that that doctor was so awful. And it sounds like since that doctor, you’ve had some better experiences, but man.
Hannah: Oh yeah, definitely.
Brianne: I just can’t believe this stuff happens.
Hannah: Yeah. After 20 years of not having almost a single answer to all of a sudden having this barrage of doctors and tests, and then that happens.
Brianne: Yeah. Yeah. That’s… seems like, “What?” is an appropriate response. Yeah. So, okay then I also just want to think about this from the diagnostic perspective again. So IBS early, and then some of the mental health diagnoses while you were in high school? Or are you… you know that now, and you’re looking back?
Hannah: I’m not exactly sure. Because they would take them off and put them on over the years.
Brianne: Yeah. Depending on who you saw and what they believed. But so then I guess what I’m wondering is what tests had you had done previously? Or not very many, it sounds like. It’s okay… I know there might be a lot versus what are they looking at now or what have they been looking at recently?
Hannah: Well, recently it’s… they’re realizing, Oh, it’s probably endometriosis so I have to have a laparoscopy, but I met with a specialist and she’s just like, “It runs in your family, so you probably have it.”
Brianne: Yeah. It’s incredibly likely.
Hannah: Yeah. And then I’d done multiple MRIs. They haven’t done a spinal tap. I’m really shocked about that. Blood draw, always. Multiple HIDA scans. I’m trying to think what else. The fibromyalgia test, which is getting stabbed with a pen for in various places which is fun.
Brianne: Poking your spots.
Hannah: Yup. And then they also do a Raynaud’s test, which I didn’t realize is a thing, where they change the temperature to drastically hot, to drastically cold in the doctor’s… in the office, and they watch how your skin reacts. It’s great. Another way they do it is putting ice cubes on it or running your hands through hot water.
Brianne: And it’s to look for the discoloration, basically.
Hannah: Yeah, exactly. Yup. And I know it’s absolutely disgusting.
Brianne: That sounds very uncomfortable.
Hannah: So now going forward, I have to have a laparoscopy, another MRI for my brain, and then a… what else do I have to do? Oh, an echocardiogram. Just to make sure the heart’s okay, but they’re pretty sure it is.
Brianne: I just had an echo, and it’s an ultrasound, so it’s very fine and gentle. And then, have you had one before?
Hannah: I might’ve, I don’t remember.
Brianne: Okay. So I never had, and what I learned, that I did not know is what for me was at least the last stage of the echo was incredibly painful cause they’re…
Hannah: Oh really?
Brianne: They have to get underneath, so they’re taking the wand, or whatever it is, at the base of your sternum.
Hannah: Oh geez.
Brianne: Sorry, I’m not trying to scare you. This is for everybody else listening cause I didn’t know.
Hannah: Yeah I think I’ve had one.
Brianne: Yeah. It’s between the base of your ribs under your sternum, and they’re trying to get at an angle. And I was like, “Oh, I don’t know what’s under there. But it does not like being poked at all.”
Hannah: Oh geez.
Brianne: It’s fine. And it’s fast, but it’s important to know without getting scared, I think, to everybody else. But I don’t mean it like, “Be worried, Hannah.”
Hannah: No, I think ultrasounds for stomach and everything are far worse cause you have to drink so much water.
Brianne: Oh yeah. Yeah. Or you have to drink stuff and hold it. Or sometimes you have to drink other gross stuff. Yeah. It’s all fun. Right?
Hannah: Oh, it’s great.
Brianne: Diagnostic testing. Okay. So anyway, so you’ve been going through all of that, and you’re cutting your course load down at school a little bit, which sounds like a good idea.
Hannah: Yes, it is. And I also have… I’m a classics major, so it’s one of the toughest majors.
Brianne: It’s a lot of reading
Hannah: So cutting that down helps. Oh my God. Yeah. In different languages. It’s great.
Brianne: Yeah. Yeah. And so we’re caught up to the present basically. So how… as you’ve been going through all of this and navigating medicine, actually one, you’re in the States, right?
Brianne: Yes. So how has insurance worked for you?
Hannah: Well, I am incredibly lucky, my school has amazing assurance cause it’s a private college. And I, for all of this, I only have to pay for doctor’s visits. I don’t have to pay for anything else.
Hannah: So I got incredibly lucky. Before college, still good insurance. But I want to say, also. My father was blunt, and he goes, “Yeah, you probably would have had to drop out of school, and it really… we probably would have had to go to a homeless shelter.” That’s how expensive it is. Yeah.
Brianne: Yeah, I mean, it’s unreal sometimes with this kind of stuff where you’re like, “How am I supposed to work if I can’t get good medical care and how am I supposed to pay for medical care if I can’t work?”
Hannah: yeah, exactly.
Brianne: Yeah. And so for you in your life right now, which is like school and about to be moving and going to the doctors. What works for you? How do you… what are you doing that makes your life functional? Do you know what I mean?
Hannah: Yeah. Yeah, I do. I used to work at a gym, and I used to be a varsity athlete too, on top of all of this. So I still work out just at a much milder level, so that’s always nice. And then I do… I have my Instagram where I just… it started out talking about books then I started talking about chronic illness, and now it’s just whatever the hell I want to do.
Hannah: Yeah. Why not? And then I’ve been trying for the past few years, I’ve gotten a few publications here and there in different literary magazines. So I’ve been trying to do that. It’s a slow process, as it is for everybody. Slower for me too, because I have such limited energy every day, but I’m working at it, but that’s basically it. I just started working again, working for an old teacher of mine at my old high school, so that’s nice. It’s just a very simple… it’s a predictable routine at the moment. We’ll say that.
Brianne: Yeah. Keeping a routine and then it sounds like finding ways for expression and advocacy, however that looks. Yeah. Yeah, and I’m excited to hear that hopefully you have a good disability services director at the school coming up.
Hannah: Yeah. That should be so nice. She actually told me, she’s like, “A lot of the stuff that he was doing was denying students accommodations that they rightfully had.”
Hannah: So, and she said, “You’re not the first student.” She’s like, “You’re the 40th or 50th student that this has happened to.”
Brianne: My God. Yeah. That’s so… I understand why it’s complicated for old institutions that have never had to think about this before. I understand that implementation will take time and intention, but having someone telling everybody to suck it up is not the answer probably.
Hannah: Yeah, and at a private college, you would expect more of them too. But no, I guess not.
Brianne: Right. You’re like, “This matters.”
Hannah: I don’t blame them though at all.
Brianne: It’s frustrating. And then I just had another question that… oh, I was going to say, and how, cause you mentioned family a little bit, how, as you’ve been going through this and learning more about it, how has that impacted relationships, especially as a teenager, right? When you want to be going out and doing normal things and can’t always.
Hannah: Yeah. I’ve mentioned… I’ve talked about my mother here and there, so I was always very isolated, but luckily, my friends recently… they have said, “We always knew something was not right at home. We just never knew how to approach it. And we wanted you to wait. And then we figured we’d get it in time.” And they did. But once I did… really, once I got a car and a license, is when I was able to go out more. And so friends was always fine, but family was always… it was a weird mix of, “You’re absolutely fine, nothing’s wrong with you,” or. “You should not even go for a walk because you’ll get kidnapped, and you can’t defend yourself.” It’s a very strange relationship. Oftentimes from the same people it would vary from day to day, and it was even weirder to cause chronic illness and autoimmune disease run rampant in my family. I just happened to get almost all of them.
Hannah: Yeah. It’s always really weird because on one hand, I’ve gotten closer to various cousins who are also going through this too, and then aunts and uncles… but it’s weird because my sister and I, we were very close growing up, and then now I’m not exactly sure what’s with her, what’s going on… she… I think it’s just a matter of the sibling… she saw one sibling getting everything, and then she didn’t, but didn’t understand at the time what was actually happening. So now as adults. Both of us are realizing we had different lives sort of thing.
Brianne: I relate to that very, very strongly. Stuff when I was a kid… when nobody thought about health as a factor, but I needed a lot of attention and even what I would now call accommodations, but nobody had that context for it. And so when one kid needs a lot of accommodations, but you don’t realize that’s what’s happening, it definitely looks like preferential treatment or unfair.
Hannah: It does. Yeah. Yeah. Because I can’t go outside if the weather is below maybe 55 degrees because my Raynaud’s is so bad. Even when it’s controlled with medication. So there’s one sibling having to stay indoors and cooked dinner, and the other one has to shovel three feet of snow because we live in New York.
Brianne: Right? Yeah. And you’re like, “It’s not that I’m just like a whiny baby.” This is me 100% defensively projecting. But yeah, it’s that my body shuts down, and before we know how to explain that or the language for that or that it’s even happening.
Hannah: Yeah. Cause the Raynaud’s was actually one of those things that didn’t have any warning signs. It just happened all of a sudden. Everything else was a gradual build.
Brianne: Yeah. And that can become morbid with so many things or it’s another just weird thing that happens that we don’t really know why, probably.
Hannah: Yeah. And it’s weird because it’s one of the most common diseases too, and almost nobody knows about it. And what’s worse for me, too is growing up nobody could find answers, and then as this past six months, really… all of a sudden I’m getting, “Oh yeah, this relative has this, this relative has this.” And I’m finding that a lot of it runs in my family, but nobody ever told me or nobody ever threw it out. I’m sure many people have that same story too. It runs in the family, but nobody talks to each other.
Brianne: Yeah. Or when you’re just having symptoms, nobody thinks to mention it. But when you say the word, they’re like, “Oh, I’ve heard that word before. This person also has that word.” And you’re like, “Okay.”
Hannah: Yeah. I’ve had critically low hypotension, so blood sugar, for a number of years. They couldn’t figure out what it was, and they my current GP diagnosed it within five minutes of looking at my file, and I mentioned it to one of my grandmothers and she goes, “Oh, yeah, I have that. I’ve had that since I was like 15.” Which is when it started for me.
Hannah: Why didn’t anybody mention it? Yeah.
Brianne: Yeah. Point us in that direction.
Brianne: Yeah. For sure. And I think there’s also… with some stuff, Raynaud’s is a really good example, where I think there are some people who only have Raynaud’s, and it doesn’t really impact their quality of life at all.
Brianne: Cause if it’s just cold hands and feet. Yeah, being cold is uncomfortable, certainly. But if it’s only that and you can see that your fingers are white, but it doesn’t really affect your life in any other way… but when that happens, if you know someone like that first, and then you meet someone who’s like. I can’t go outside in the cold because it’s so uncomfortable.
Brianne: It skews people’s expectations.
Hannah: Yeah. It’s actually life-threatening for me. That’s how bad it is. Yeah. Because I have five minutes to get out of the cold before I develop frostbite, and I have developed frostbite in the past.
Hannah: I have dead tissues on two of my toes and three of my fingers.
Brianne: Yeah. That’s significant. That’s really different. That’s really different from, “Weird party trick. My fingers are white.” You know?
Brianne: Yeah. And so that… yeah, family, man, it’s so complicated, and I think it’s… one thing that’s really interesting that I’m slowly learning more about as I have the brain power for, is one, what it means for this stuff to come down in families. Maybe it’s genetic, maybe it’s environmental, maybe it’s something else. And somebody, Meredith, who was on an episode that just came out, actually, she sent me a podcast that I’ve listened to half of, and it’s like a therapy podcast, and it’s an interview with someone talking specifically about how… it’s called Adverse Childhood Experiences.
Hannah: I heard of that. I actually need to watch it.
Brianne: Yeah. So it’s about how ACEs, or childhood trauma basically, correlates with chronic illness, but the person who’s talking about it is really careful to be like, “I’m not saying chronic illnesses in your head, and that because of trauma, you’re mentally ill and you know psychosomatic,” but just that all of these experiences impact our nervous system and that controls our immune system and our immune system can go haywire and how does this all kind of correlate basically.
Hannah: I think if I had had no trauma besides medical trauma, and then also had just a stable upbringing, people knew what the diseases are… also not working 40, 50 hours a week from 14 onwards.
Brianne: That’s a lot.
Hannah: I really do… Yeah. I know… Really do think that I would be in a lot better of a place and that disease onset might’ve started later in life because it has been determined it would have started at some point, but not at… you know, all ages, just things randomly happening and then a crash.
Brianne: Yeah, yeah. Do you, I used to ask people this a lot, and I think I’ve forgotten lately, but do you have a way that you explain it all to yourself, even if it’s not really scientific… The story that you have created to explain it to yourself.
Hannah: I think it’s just I got crappy genetics, and nobody that family communicates. I think that’s it because environmental, it’s so hard because we live in such a polluted world. It’s so hard to go, “Oh, this is what caused it.”
Brianne: Oh, definitely.
Hannah: Yeah, and I have plenty of family members who are in the military, so I’m like, “Did something happen? Genetic…” I have no idea.
Brianne: Yeah. Someone… I have no idea anything about this. Someone popped up on my Twitter feed recently who he… I think he’s a veteran, and he was talking about chemical exposures for people on some military basis because of… I want to say weapons testing or something. Again, I… nobody think of this as science that I am endorsing. It was just someone popped up talking about this and like, “Oh, this is just one more element that makes sense for some people to explore.” But we’re also all differently vulnerable. Environment and genetics are still really related, I think. I got really sick in a moldy house that I was living in with my husband, and he did not get really sick. So did the mold cause the problem or did my genetics cause the problem? I think it was both, but I don’t know. One day maybe science will untangle all of that.
Hannah: Maybe, I don’t know.
Brianne: But we’re not there yet.
Hannah: Maybe lower insulin prices and EpiPen prices first.
Brianne: Oh my God, I know. I know. There’s so many places in the way that this system works right now that I would love to see fixed more than I would like to see additional research into everything, which I would also love to see.
Hannah: Exactly. Yeah. Yes, yup.
Brianne: Yeah. If you, as you’re kind of doing a little bit of advocacy, but also focusing on finishing school and getting good care and everything else.
Brianne: What are you most interested in, or what do you want to write about the most or focus on?
Hannah: Oh, ideally I’d want a wind up back in a library. And then I have been meeting just to start a YouTube, just to talk about life, but that’ll probably come when things have calmed down a little bit. And then since I have a classics major, folktales and myths, I’ve always liked reinterpreting them. And poetry too. I have a couple of poems published here and there, so I do all of that stuff. So hopefully just… what I’ve always said is I want to make enough in life money-wise to be comfortable. I don’t need to be rich. I definitely don’t need to be poor. I’ve been there. Just enough to be comfortable and that’s what it is.
Brianne: Yeah. Yeah. And find out how to take the best care of your body. Oh yeah. That too. Yeah. But I think that’s part of it too. Right now in our culture, it kind of feels opposed of like, “Oh, well either either you want to go out and have a heavy-hitting career where you make lots of money and completely sacrifice your health, or you want to prioritize taking care of your body and let everything else…” And that’s not necessarily a good thing, but I feel like it’s how things are right now.
Hannah: I’ve always said too, I want a main job where I can leave it at the door, and I don’t have to think about it once I come home because I’ve seen my father growing up… he’s been in various high positions and it’s always… he’s always brought his work home with him. And same with my sister… always has brought her work on with her, brother-in-law too. So it’s just… I don’t want to do that.
Brianne: Yeah, I think that’s fair. That’s… cause I used to work… when I was working full time, I was working as an editor in online publication, so stuff that needs 24 hour turnaround constantly, and as soon as anything gets in the way, it’s like, “Cool. You can take a nap now, but if you nap now, you’re working later.” So there’s no wiggle room at all. And that’s different than jobs where you can show up, and even if sometimes you’re not firing on all cylinders, you won’t have to pay for that later, which could be real hard.
Hannah: Oh yeah, I believe it.
Brianne: Yeah. And then… so as you are probably also just getting more involved in online communities and stuff, have you learned anything about chronic illness that almost surprised you or that you want… that you wish that more people knew?
Hannah: I think part of it is fatigue. I actually… cause the fatigue was a new symptom of mine only two or three years ago, is that it’s very common. Even if it doesn’t have a name. Just to be tired is a thing. I didn’t realize that. I think too is, not leaning on people around you as much actually going to a therapist in general. I think that’s an important thing too, is just remembering that they’re not there as your therapists, everybody in your life. There’s a designated person that you pay to do that for you.
Brianne: Yeah, find somebody, and I think that is true, and figuring out the balance of making sure that you communicate with the people around you about what’s actually going on. Cause I think some, some people will have the opposite instinct, of like, “I shouldn’t tell my friends about my symptoms or my illnesses because it’ll be too much for them,” and then they can’t support you. And it’s like… which a therapist can probably help with too, is actually learning how to talk about it.
Hannah: I grew up with that mentality. That was ultimately the downfall. A lot of my mental crash too, was I was always raised, “Don’t tell anybody,” despite the fact… teachers and that’s about it.
Hannah: Even family members didn’t know.
Brianne: Yeah. Yeah. The full extent of what was going on. And I realized when we were in then we didn’t talk about them. So you had kind of a couple of major crashes. Did anything specific help you recover from those? Or do you think it was just time and rest?
Hannah: Time and rest. A lot of my stuff is… it’s not progressive is what they realized. So it’s just cyclic. I know I’ll have a crash probably every… a major one now, maybe about every five or seven years, and that seems to be the pattern throughout life, so I can anticipate it. Yeah.
Brianne: Yeah. I feel like part of any flare cycle, which I’m also bad at, I think everyone is bad at it because we want to be optimistic, but is getting more sensitive to like, “What does it look like when I start to get fatigued? How can I start kind of babying myself a little bit earlier in the process? Even though it’s hard and it doesn’t… I don’t want to.” I want to keep doing everything I’ve been doing, but maybe if I can accept it a little bit earlier then I can prevent it from bottoming out so much.
Hannah: One thing I do a lot is, as much as I don’t like it, I’ll just lay down. I might sleep, I might not, but that helps me a lot too. And doesn’t mean I’m not doing something, as well cause iPhones are amazing. You can do everything on them.
Brianne: It’s true. You can consume a lot of information while lying down. Yeah.
Hannah: Exactly. So I think that helps too. Being in the 21st century and having the iPhone there.
Hannah: One of my grandmothers, almost the same medical story as me, and she was saying to me earlier today actually that she’s like, “I had books. That’s what I had. You guys have books too, but…” she was saying, “Now when I have a crash, I have my iPad, and it’s so much easier than it was six years ago.” She’s in her eighties right now.
Brianne: Yeah. Yeah. I… cause when I’m like kind of half-napping, when I need to do that, I listen to audio books a lot. I never ever read a romance novel before I got sick, and now I listene to romance novel audio books all the time. Because if you doze out, you lose… you know, you kind of fall half asleep and come back, you almost never miss anything.
Brianne: They’re so predictable that you can always figure out what you missed, so that’s what I do now. But i those are days when I couldn’t probably physically read, and I think about it… before technology, you would need another person to read to you if you wanted any form of entertainment or stimulus, and that’s not immediately available.
Hannah: That’s also… a lot of people have animals too. I mean, I have my three cats that are all over my Instagram. Yeah. That’s why people have animals, is to pay sort of attention to them too while they’re crashing.
Brianne: Yeah. You’re like, “Just come nap with me, cat. We’ll nap together. It’ll be so nice.”
Brianne: Yeah. Yeah. And then is there anything about all of it, so your own experience with doctors or insurance or accommodations or what you’ve learned as you’ve gone through it that we haven’t talked about yet today?
Hannah: Geez, I’m trying to think.
Brianne: I know it’s a huge question, but.
Hannah: I don’t… I think we almost got everything. I can’t think of much else that we didn’t.
Brianne: Yeah. No, it’s okay. I feel like these conversations ended up being very, very robust, but I know some people will have had one or two things that they know they want to talk about, and I just want to make sure that we cover those.
Hannah: Well, there is the fact that, you know, nothing’s accessible. We can say that.
Hannah: I’m actually sitting a block away from my favorite restaurant, and they just switched to paper straws, and I can’t use… if it’s cold water, I can’t pick up a cup or anything.
Brianne: Oh, yeah.
Hannah: Right. Yeah. And so, but paper straws disintegrate. Luckily the owner knows me, so if she’s in there. I’d be like, “Hey, can I get a plastic one from the back?”
Brianne: Yeah. Give you the good stuff.
Hannah: Yeah. But it’s weird cause you have to carry plastic straws or… I’ve had this happen a lot, too where people think I’m taking drugs, and I’ve even had police… the police around or security around, come to me and say, “Why are you taking X, Y, Z?” And I have to hold up my prescription bottles saying it’s not narcotics. It’s literally just a pain medication. Or something that will help me to survive to the end of the day.
Hannah: That’s always very weird one too, is when people try to confront you. I also have a cane too, so that is weird because I’m very athletic person, but some days I have to use my cane.
Brianne: Yeah. And a lot of people, it’s similar to that people don’t realize that ambulatory wheelchair users exist… with every mobility aid. Mobility isn’t as fixed as healthy people think it is. Or as the media makes us think it is. Some days are fine. Some days you need help. It doesn’t mean you’re faking it.
Hannah: In that show, I don’t know if you know it or not, Blind Spot.
Hannah: Yeah, it gets bad after seasom three. But anyway, they were really good about representation and they had one character with cerebral palsy, and it was a mild case of cerebral palsy, but sometimes she had a cane and sometimes she didn’t. It was never acknowledged. It was really nice just to see that representation and various characters would have stuff like that where sometimes it would be there, sometimes it wouldn’t. It dealt a lot with mental illness too, and it would just… like a character might have a panic attack, and the other characters wouldn’t make fun of them, or anything like that. Just really nice. You don’t see that very often.
Brianne: No. Yeah, that does sound amazing because all of those things. Sometimes being chronically ill… it’s not always a crisis. A lot of it’s actually really boring. It’s just really boring in a way that we don’t see in media, so we think it’s unusual and it’s not unusual.
Hannah: Yeah. I mean, I have two or three doctor’s appointments a week, but it’s like maintenance. It’s physical therapy. It’s allergy shots. It’s just I need to go get my blood drawn, and I just drag somebody with me. Cause I’m like, “It’s gotta be boring. It’s gotta take 20, 30 minutes.”
Hannah: Might as well get something else done while I’m here.
Brianne: Yeah. You’re like, “There’s just a waiting period. The actual thing takes no time often.”
Hannah: Yeah, exactly.
Brianne: Yeah, it’s true. I’ve been having more appointments than normal the last couple of weeks cause I’m doing a new round of diagnostic testing, which sounds like what your year has kind of been like and I’m so glad that I don’t have this many appointments normally because it’s all of my energy. Just going to all of this stuff to do these tests, to make sure I understand everything, that I follow up properly. That’s my full time job right now.
Hannah: Yeah. I mean, before I was talking to you, I was actually calling doctors cause I’m switching doctors and trying to get files over to various ones is difficult to cause everything’s in network now. It’s not private practices where you’d say, “I need this transferred here.” It has to go through so many consent forms.
Brianne: Yeah. Yeah.
Hannah: I mean, I’m glad HIPAA laws are in place, but at the same time, they make life difficult.
Brianne: Yeah. Well, and now, I don’t remember the full details of this, but I read a book this year called The Digital Doctor, and it’s specifically… it was really interesting. It’s about technology and medicine and how technology has impacted medicine. And there were a bunch of different sections, but one of the sections was just specifically about online charts, so patient portals and how they’re keeping all of our information, and the ways that, first of all, government funding have created weird incentives that these aren’t working the way that we would want them to as patients. And two, yeah, the way that HIPAA laws were not designed for the digital age. So that’s not to say that we all want our files to be publicly accessible or something, but HIPAA doesn’t… it didn’t anticipate the world that we live in now. And that’s really frustrating.
Hannah: I actually shut down my portal because I have nine specialists and seven of them are through one network. So I actually shut down the portal and they asked why, and I said, “Do you see how many doctors I see you had your network? It’s too much, and I’m not comfortable with everything online. So of those seven doctorsm six of them go, “Oh, I hate the portal. I shut mine down too.” They’re the doctors. Yeah.
Brianne: They’re like, “It’s just so aggravating.” There’s so much to it, but this book was really interesting because I think it gave me an understanding… cause it’s written by a doctor, but it’s not about patients and symptoms and stuff. So it totally bypasses that. It just talks about how doctors’ jobs have really changed with technology, which makes sense.
Hannah: Yeah, I imagine.
Brianne: And he’s like, “Here’s the vision for the future that technology could create that I would love to see, and here’s what has actually happened.” Where we’re bogged down and spend an outrageous amount of time just answering messages instead of spending time with patients or making sure that we write the right words down for insurance, and that’s why when you go to a doctor they’re staring at their laptop the whole time. All this kind of stuff. It was informative, as somebody who goes to see doctors regularly to be like, “Oh, this is why this is happening.” But yeah, patient portals are weird. Although I will say my neurologist’s office, they do not have one at all. And so it’s both good and bizarre because literally, I probably have one somewhere on this table, but every time they need to do followup, they mail me handwritten notes.
Hannah: I’ve gotten that too.
Brianne: Yeah. So just about everything. There’s… I’m not going to find anything out by email. I just have to wait for the post to arrive and then I’ll know what my neurologist wants me to do next. So that’s the opposite, I guess.
Hannah: Yeah. And I live in a rural town, so it’s difficult when. Insurance has to mail me something, like, I guess I’m waiting two weeks and I’ll have to pay a late fine. That’s just how it’s gonna happen.
Brianne: Yeah, yeah. Every single one of my either authorizations or non-authorizations from my insurance company for a test or a procedure has arrived after the test or procedure. “Thank you. This is helpful that you’ve told me that you have approved or agreed to pay for or declined to pay for something that I already did. It’s over now.” So that’s all the really fun junk of navigating healthcare, right? Yeah. But yeah, we were talking about accessibility. Another thing about paper straws that you just mentioned is also that I guess… I don’t know how many of them, but some of them have gluten in the binding… whatever’s gluing them, and a lot of people who are critically ill are on gluten-free diets and the straws are not labeled as containing gluten. So that’s just a bonus healrh risk.
Hannah: Yeah, I know. I mean what I run into… cause I actually have a near anaphylactic allergy to lactose and dairy… two separate things, most people don’t know that. There you go for your viewers. Most medications are actually built with lactose as one of the fillers. So the past couple of months, they kept putting me on medications and because I was so stressed, I didn’t read the labels as I normally do, I ended up having a reaction, and it partially shut down my intestinal tract for a while there. Yeah, it was fun. It was very uncomfortable. But I did… luckily they… it was caught in time. I didn’t have to do a feeding tube or anything like that, but it was a blast.
Brianne: Yeah. Everything slowed down, and it probably took a little while to figure out why, right?
Hannah: Yeah, definitely. Yeah. A lot of pain there and everything.
Brianne: Yeah. Yeah. That’s it. That’s the fun stuff.
Hannah: That’s the fun stuff.
Brianne: Yeah. Yup. Yeah. And then is there anything else just looking forward that you’re still exploring, or do you feel like you kind of know what’s going on and you’re figuring out how to manage it?
Hannah: I think it’s getting doctors to agree. What exactly… is it fibromyalgia or is it ME? That’s really what it is right now. Is it one of those two? I still have to get tested for Lyme by a Lyme specialist. Cause I live in New York. It’s almost a routine thing for a lot of chronically ill people, just to make sure.
Brianne: Yeah, yeah, definitely.
Hannah: It’s really just, which one are they going to decide or are they going to decide both?
Hannah: That’s really what it is going forward. I mean, the rest of it, they know how to manage. For the hypotension, eat lots of salt, twice the amount most people have to eat. That’s fun. The endo, I’m on medications for that. A couple other things. It’s just managing through. Unfortunately, diet and exercise.
Hannah: We hear that all the time, but it’s true. It does help.
Brianne: Yeah. And learning with exercise, what movements feel good for your body and don’t cause crashes. Cause that is a complicating factor. For sure.
Hannah: Yeah. Tennis ball therapy for me, that helps. Where you put it on the pressure points, and then you just lay there. That’s wonderful.
Brianne: Yeah. I’ve been doing PT for my neck lately, and I’m just at the stage of PT that’s almost entirely massage. So I just get to go and have a massage twice a week, and I’m enjoying that. Yeah. I’m sure at some point… I have exercises to do at home, but I’m sure at some point there will be more exercise involved, but right now it’s quite good. Yeah. Yeah. And all three of those ME, fibro, and Lyme are clinical diagnoses, and it kind of depends on who you see. You could find a doctor to diagnose you with each one of those, and then the real challenge begins of finding out what is most helpful for managing your specific symptoms. Yeah.
Hannah: I mean, the grandmother that I mentioned, she has all of those plus endometriosis and all the comorbities that come with it. So the endo… of course, at 80-something doesn’t bug her anymore, but everything else… she crashes and burns all the time, but she’s learned to manage it. And I’m just thinkin, when I listen to her, what was it like in the 50s and the 60 when they didn’t even know what this was.
Brianne: Yeah, it probably didn’t have a name.
Hannah: No, that’s what she said. She only got diagnosed in the 80s and then the nineties… for everything.
Hannah: I just can’t imagine being at that in the 40s and 50s, not knowing. I can’t imagine it at all.
Brianne: Yeah. It’s a whole other landscape.
Hannah: Oh, I know.
Brianne: Yeah. Well thank you so much for taking the time to talk to me.
Hannah: You’re welcome.
Brianne: I’m excited to share your story and your perspective, cause that’s the idea is collecting all of those.
Thank you for listening to episode 47 of No End In Sight!
You can find Hannah on instagram @unclassicreads and you can find me on instagram and twitter @bennessb. And of course you can find this show on instagram @no.end.in.sight.pod. I’ve been posting each episode as a story but haven’t posted to the main feed in a while because I’m so behind on transcripts – as you know. But of course, the whole reason that I’ve started a patreon account is to help with those transcripts, so I’ll go ahead and plug that again: it’s patreon.com/noendinsight.
Next week I’ll be talking to a guy with ME, so make sure you subscribe in your podcast app to find out when new episodes are available. And if you’ve been enjoying this show, I would be so grateful if you’d leave a review on Apple Podcasts so that new listeners know what to expect from the show.
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.
This podcast is supported by my cross stitch company, Digital Artisanal. When I’m up for it, I make simple modern patterns that you’ll actually want to hang in your home. I’ve got some fun fall patterns in the shop, and dozens of very simple icons that you can customize to your heart’s delight. I’d love it if you checked us out at digitalartisanal.com.