Emma talks borderline personality disorder, hypothyroidism, autoimmunity, and pursuing an ME diagnosis.
I’m Brianne Benness and this is No End In Sight, a podcast about life with chronic illness.
So first, I want to do that self promotional thing again and tell you that I have a new piece up on Medium called It’s Okay To Rest. It’s about rest, obviously, and how this podcast has helped me realize that getting a lot of rest is one of the most effective (if sometimes frustrating) ways for me to manage my symptoms. If you’re interested, you can find it by heading to my Medium profile at medium.com/@bennessb. And yes, the at sign is necessary.
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This week I’m talking to Emma about depression, anxiety and borderline personality disorder, along with hypothyroidism, autoimmunity, and pursuing an ME diagnosis.
And I want to add a content note to this episode to let you know that Emma mentions suicide and suicidal ideation twice very briefly. Both mentions are in passing while she’s making another point, and neither involve any detail.
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: Well, I like to start by asking people, how was your health as a kid?
Emma: That’s a good question. I was actually born… it’s not that early, but I was born three weeks early because my mother had blood poisoning.
Emma: So I didn’t get… oh, and I was also born with the cord around my neck, so I didn’t actually get the best start to life.
Brianne: That’s some serious stuff.
Emma: I was fine. But I developed childhood asthma because in New Zealand, as you can tell with my accent, it is extremely common. Because our housing is just shit. So I had asthma right throughout as a child right up till now. But it wasn’t until I started hitting around 12… I had a lot of mental stuff start to kick in. Like, my father had left my mother when I was about ten, so I distinctly remember around about when winter was coming into spring. That period of time. Which for New Zealand is reversed for Americans…
Brianne: Right, right. Winter to spring. So that’s like, now?
Emma: Yeah, November December-ish. I noticed… or, October, really. I noticed I would get sick a lot. I was just always sick. And of course my school would have events at this time of the year, so I’d always miss the events. And then, so I was a really healthy kid. I was running around like mad. I was just so active. And then I turned 16 and I don’t recall when it happened, but I got mono.
Emma: And then that became Myalgic Encephalomyelitis. I’m learning to say it. So, that was the start of my health crisis slash journey.
Emma: From that point on, my autoimmune disease kicked in because obviously with ME, your immune system doesn’t turn off. So it’s like the shit just hit the fan. And I’ve just been dealing with it up until now. It feels like there’s one problem after another.
Brianne: And so yeah that’s understandable. So you were 16 when you got mono and was there like a… I’m going to do a hand gesture. Was there like a crescendo to that or did you kind of just get sick and then stay at that exact level of sick?
Emma: I got sick and I wasn’t doing great for a few months, but I seemed to be okay.
Brianne: And were you in school, at that point?
Emma: Yeah. In New Zealand, we call that college, so that’d be high school for America. Around about the end of the year, I started to notice that thinking wise and mentally I felt just not right. I could feel like my brain slowing down. And it really sort of reached a peak in the next year. You know, this is my final year of school. These are the big exams you’ve got to do. I was falling asleep in class – in my favorite class, even. I love history, so I was falling asleep in my history classes and I couldn’t fight it. I would just doze off. I would sleep as much as I could, but just, nope. Doze off. So it was definitely a sort of plummet as time went on, and that’s still been a continued trend now. I’m 26, so I’ve had ME for 10 years at this point. Yeah, I have not been back at the point I was when I was 16 since.
Brianne: So it was kind of like a steady decline to that level of health and then you stayed there. Did you finish school?
Emma: Barely. I wanted to drop out, but my mother threatened me with being kicked out of the house. And I was 17 with generalized anxiety disorder, so I had an absolute panic attack about that, and I stayed in school. I was silly and I did two art papers or art classes. I was doing photography and fashion design, and those are quite heavy class loads and I was falling asleep in my classes. And yeah, I passed the year with… we use credits, it’s called NCEA, and you get a credit or you’ve got a certain amount you can get from a class or whatever. I passed with one credit to spare because in my history exam, I decided to bullshit an essay about Elizabeth the first, the great… yeah, ME brain. I did an essay on her completely just on the spot. Got to love my selective memory. So I’m quite thankful I did that. I had not planned on doing it, but I saw the question and I was like, “Yeah, alright, I’ll do it.” Yeah because without that, I wouldn’t have got university entrance and that would have made things a lot harder.
Brianne: Yeah. And so I want to just backtrack for a sec. Because you mentioned a generalized anxiety disorder, so did you have a diagnosis for that at that time?
Emma: No. I got diagnosed with depression and generalized anxiety disorder at the same time, and I was 19. Wait, no, I was 18. And when I was 23 or 24, I actually got a diagnosis of borderline personality disorder.
Brianne: Okay. Okay. So we’ll track through to that.
Emma: They all tie into each other, so they’re all…
Brianne: They’re hard to pull apart or they don’t pull apart, right?
Emma: They don’t. No.
Brianne: But so at 16, when you are 16 or 17, when you want to drop out, there’s nothing in your medical file that would kind of explain a choice like that because of how everything works.
Emma: My mother had been like, because I was, this ties into the BPD… I was an incredibly violent child or teenager. I was quick to anger. I would have the typical BPD rage. My family is a huge trigger, which sucks to say, but that is the reality. And so it was really difficult for me as a teenager because… I’m sorry, I’ve completely forgotten the question.
Brianne: No, no, that’s okay. I was asking at the time, so at 16 and 17, as school’s getting even harder, and there’s nothing in your medical file at this time really, right?
Emma: Yeah. My mother had dragged me to the doctor and I had blood tests done because she didn’t exactly want to entertain the idea that I also had depression. I do. I think I’ve had depression since I was ten. And I had blood tests done. And to this day, I do not know the results of that blood test. I don’t know if that picked up on anything. I don’t know if that picked up on any changes whatsoever in my body, because you know, getting information out of doctors, it’s kind of like squeezing blood from stone.
Brianne: Yeah. Yeah. It depends on what is kind of available by default, right? Especially, if you’re under 18.
Emma: I struggled so hard, right up until I was 19. And, there’s something else on the tip of my brain that I want to say, and I can’t.
Brianne: I know it’s so frustrating.
Emma: I’m having really bad brain fog today.
Brianne: Yeah. That happens all the time is what I’ll say.
Emma: Yeah. Because she was like, “Oh, it’s totally your hormones that are causing all these problems.” And it’s like, “No, it wasn’t.” Yes, I remember now. I was chronically suicidal from 15, and then it just increased in intensity until I was about 17, 18, 19. It just got so bad. I was just ill. I was incredibly ill.
Brianne: Yeah. And so all of that was happening at the same time that you got mono and in the middle of all of this. Okay. And then you finished college. And then did you go to university from there?
Emma: I did. I actually went to Polytech. I had originally wanted to do costume design. And in New Zealand, your options are quite limited when it comes to any sort of costuming, whether or not it’s stage or TV shows/movies. I’d actually applied to Toi Whakaari, which is sort of new Zealand’s leading acting, costume, stage stuff… A lot of New Zealand’s sort of best or well known actors come through that school. So I had applied to them, and I nearly got in. I think I made it to the top 12 when they were taking eight people that year. And yeah, basically they said, “Well, you’re seventeen, so you don’t necessarily have the life experience.” So all I can say, I’m actually incredibly thankful I was not accepted, which is a double edged sword because I still really love costuming and creativity is a huge part of who I am. And so that sucked. But I had a backup plan. So I actually went into network engineering, complete polar opposites. But I am very good with computers. I’m very good with setting up networks. That is great fun for me, all the configuration and stuff.
Brianne: And so were you in that program… It sounds like you got three diagnoses all at once when you were 19, did you say?
Emma: No, I only got two when I was 19. That would be the depression and the anxiety. So I started antidepressants.
Brianne: And was there any acknowledgement of the ME at that time? So you had had mono?
Emma: No. I had gone to my doctor around about the same time. This was my childhood doctor. I’d been with him for 19 years. And I said, “I’m falling asleep in class. I feel so tired. I can’t concentrate. I’m forgetting my words. Sometimes it feels like I’m drunk. I just don’t feel right.” And he looks at me and… I mean, you can tell, but no one else can tell… I am a bigger person, so at the time I was actually a lot smaller, but he turns to me and says, “Oh, you have sleep apnea.”
Emma: I have never stopped breathing in my sleep, even now as a bigger person.
Brianne: Which is the definition of sleep apnea.
Emma: Yeah. If anyone has sleep apnea, it is my partner. Ask me how I know.
Brianne: So yes, not helpful, sounds like.
Emma: I started off my journey with dealing with everything because at 19, that was the point where I was like, “Something’s not right. I’m going to start dealing with this.” That was the first major hit of invalidation from a medical professional that I had ever experienced. I had actually gone to him and I had said, “I think I have chronic fatigue syndrome.” And, “Nope, you have sleep apnea because you’re fat.”
Brianne: Yeah. No tests.
Emma: No, no, no.
Emma: I did not finish my degree. I have half a degree in network engineering. I dropped out at 19.
Brianne: And you said they started you on an antidepressant at that time?
Brianne: Like around the same time it sounds like.
Emma: Yeah, because I had basically broken down to my mother and said I want to kill myself. So I got dragged out to the doctor, as you do. So that’s when I got those two first diagnoses.
Brianne: Okay. And, you were saying, I think I interrupted you, but it sounds like the antidepressant did not help or if it helped, it didn’t help everything because there was other stuff going on.
Emma: It kept me stable for its time, but I’ve ended up on four different antidepressants.
Brianne: Like trying one after the other.
Emma: Yeah. I was on citalopram, and then escitalopram, and then Prozac, and now I’m on venlafaxine.
Brianne: Okay. And I know it’s kind of impossible to pull all of this stuff out from each other, but do you… What did it help with? I guess is the question that I have. How did that fit into your larger health?
Emma: Honestly, I don’t even know I was dealing with so much stuff. I was chronically still suicidal right up until things sort of reached a peak where I was going to lose my relationship and I decided I have to do something because things that just wrong, everything is wrong. I can’t do this anymore. So by that point, I was already on the second antidepressant. They really did nothing for me. Again, I have BPD, so a treatment for that is actually what made the biggest difference for me.
Brianne: And I want to get to that. But, so you left school, were you able to work?
Brianne: No. Yeah, because that’s also hard obviously.
Emma: I was threatened with my school. I was threatened with being expelled or something happening. This happened in 2012, so this is quite a long time ago. But something was happening, and I literally pulled up whatever text communication thing we were using at the time and messaged my partner like, “I’m dropping out. I can’t do this anymore. I want to cry. I am so stressed and upset, and I just can’t do this anymore.” I literally quit that day.
Brianne: Yeah. Yeah, it was a bad situation, it sounds like.
Emma: My intention was to go back to school, but that’s part of the whole ME sort of realization that has sort of led me to today. I kept trying to get better, to go back to work, but it just never happened.
Brianne: Right. Right. That’s so mixed into everything. Okay, so that was at 19. And I think you said you were 24 when you got the BPD diagnosis.
Emma: Yeah, I was about 23, 24.
Brianne: Okay. So there were a couple of years there where you are trying, it sounds like, trying a couple of drugs that were not helping and what else was going on? Like what were you up to?
Emma: So I spent from August 2012 right through 2013 and into early 2014 actually housebound. My anxiety was so intense I couldn’t leave the house. My partner had to go with me to the doctor. He had to actually hold my hand because I just couldn’t do it. I was a wreck.
Brianne: And how did that feel? The reason that I ask, so I understand that it’s probably impossible to answer that question, but the reason that I ask is when there’s a couple of different things going on, and you are sure that this one is anxiety as opposed to this one is fatigue. What does that distinction feel like?
Emma: Well, fatigue is, for me, it’s like my body has been encased in lead. Every single bit of my body aches. It’s like you can’t get relief from that ache, and you just feel so heavy, and you just want to curl up in a ball and cry or fall asleep. I just slept. You just sleep for hours and hours and hours.
Brianne: It’s a very physical feeling.
Emma: I mean, I definitely had the fatigue during that time in my life, but from what I had been told and the messages I was being sent is, “Oh, it’s a mental health issue.”
Brianne: Sure. Which is always out there, and even when both are happening.
Emma: Yup. So I ended up asking my doctor… I’d switched doctors by this point because the whole sleep apnea incident fucked me off, incredibly. So I found a doctor that was closer to me and had good reviews and blah, blah, blah. I had actually asked for a referral to the community mental health services here… horrible, understaffed, underfunded, the wait times are ridiculous, like you’re waiting 6 to 12 months to see a psychiatrist.
Brianne: And I realize I don’t know much about your healthcare system, so do you pay for any of your healthcare or is it all covered or is there an in between?
Emma: It depends. Doctors are subsidized. We pay full price for dental care, mental health care. If you go through the public system, it’s free, but it comes with the very, very long wait times. These days, I see a private psychologist, unfortunately not very cheap, but she has been great.
Brianne: Okay, so at this time, you’re waiting. It’s a long waitlist, and this is for the public service. Okay, so that’s where we are. New doctor, and then going in for mental health care, waiting, which why is it like that to navigate healthcare? I wish I had an answer. Yeah. Okay.
Emma: Yep. So they put me through a CBT group, and I found that really helped with my anxiety. But I said to them, “I am still struggling.” So I got put into DBT [Dialectical Behavioral Therapy], which is one of the best treatments for BPD. But at the time I did not have my BPD diagnosis. So, in the entire group, I was the only one who did not have a diagnosis of BPD or bipolar. The irony. So I’d done that, and I found that really helpful.
Brianne: And how does that therapy work? Because I’m more familiar with CBT.
Emma: DBT has a lot of focus on your emotions. Rather than sort of critically and analyzing your emotions, with DBT you are looking at your emotions. You are validating the emotions. A huge component is mindfulness and meditation, which ties into, like, “wise mind.” So it’s like you’ve got your emotional mind and your logical mind, and you need to find the balance. It changed my life, honestly. I’m so glad I got to do it, even though the course was incredibly short. It saved my life really.
Brianne: Yeah. And so was that part of it? Because you had said things were really getting to a tipping point with you needing to figure out what’s going on and to take action. And was that a part of it? The DBT?
Emma: Yep. It helped lessen my depression, but I still didn’t feel right. So I finally got to see a psychiatrist, and he took one look at me, and he’s like, “Here, go do these bloods.” So we did the bloods, and then I came back a month later and I got diagnosed with hypothyroidism.
Emma: As far as I know, it is not autoimmune, which is very surprising. I suspect it might be, but my thyroid just stopped working. So they decided that obviously this was because after I had started meds, which is a whole other fucking drama, after I’d started my meds I started to feel better. So it’s like, “Okay, we can just charge you now.” Shouldn’t have done that.
Brianne: And was that just like a Synthroid or something? Like a thyroid medication?
Emma: Here’s the drama of that. So my psychiatrist recommended that I change doctors. So I did. So I went and saw this doctor that’s designed to be sort of subsidized for people under 26 because I was 22 or so. And so I went there, and the doctor was like, “Yeah, your test results are low, but I don’t think they’re low enough. I’ll ask a endocrinologist.” We had to deal with all that drama, and the endocrinologist comes back and says, “No, no meds.” So I’d actually been wanting to switch birth control at that time. So the doctor tells me that I’m being denied thyroid medication right before I have a Mirena [IUD] inserted. So I’m laying there in pain and in mental pain because you know, I’ve just been incredibly invalidated.
Emma: So I ended up doing my own research because I was like, “Look, this is ridiculous. My results are very low. I am showing incredible symptoms.” Because we had assumed that all my problems were because of my thyroid.
Brianne: Right. And the symptoms of hypothyroid are like sluggishness, fatigue, all of those things. For some people, that’s really what’s going on.
Emma: Yup. So my partner and I were at the point where we were looking to import meds from overseas because it was bad. I was not functioning as a person. But I did my research. I found a group called TANZI in New Zealand, and essentially they are a Facebook community of people with hypothyroidism. And they actually talk a lot about holistic doctors because they are more inclined to believe you.
Brianne: And they use like functional lab ranges, which is kind of a narrower… what they would call a healthy thyroid range.
Emma: And they take into account your symptoms. They don’t just look at the sheet of paper with your numbers. They actually examine what is going on with your entire body. So I went and I saw the intake doctor of this holistic doctor, and he says to me, “Oh, are you on any medication?” And I said, “No.” And he’s like, “What?” I was like, “No, I’m not on any meds.” He’s like, “You aren’t on T4 at all?” And I’m like, “No.” He’s like, “Okay, don’t worry. We’ll put you on meds.” And I was like… I was ready to cry. I was so happy. So eventually I did start… it goes by many names… essentially it’s pig thyroid. That also saved my life.
Brianne: So when you started it, it sounds like you noticed a difference?
Emma: Yup. But it didn’t completely make me feel better. It didn’t relieve the fatigue. I still had issues that weren’t being explained with my meds. And I’ve been on my thyroid meds for a long time now, and I’m still dealing with this incredible fatigue and all the other ME symptoms. So, I just, you know, chugged along with life. I picked up a few autoimmune diagnoses as along the way, which is the funniest story because I found out I have Hidradenitis suppurativa, and that was a self-diagnosis.
Brianne: Okay. And tell me what that is.
Emma: Oh boy. It’s disgusting. I mean, you’re not a disgusting person for having it, but what it does to your body, it’s not nice. Essentially, some people call them boils. I personally call them cysts because I feel like they act more like a cyst. In my case, unfortunately, I have them from top to bottom. A lot of people just get them in the armpits and chest, if you have a chest, stomach, under the stomach area, if you’re a larger person, the groin, the buttocks.
Brianne: So like, places where skin meets skin, it sounds like?
Brianne: Like wherever that’s happening on any body.
Emma: Whereas, in my case, I get them everywhere, my face, my neck, my ears. I get them inside my ears.
Brianne: And are they uncomfortable?
Emma: They are painful. My partner has gotten very good at helping me with them. I do lance them because I don’t want to deal with the pain. But I eventually ended up in hospital because there was one that we couldn’t deal with ourselves. So I ended up seeing a surgeon, and I told him this is what it was, and he was like, “How do you know what that is?” I’m like, “I looked it up online. I’ve been dealing with this a while.” He’s like, “Wow.” Then he confirmed the diagnosis for me.
Brianne: And he didn’t say anything about the internet?
Emma: I know. Oh boy, do doctors hate self-diagnosis. Which is actually funny because my BPD diagnosis was actually a self-diagnosis, and then I saw my psychologist and after a few months she confirmed it.
Brianne: So you have a good track record of accuracy, it sounds like.
Emma: Yes, my ME is actually at the moment a self diagnosis.
Brianne: And we’ll talk more about everything around ME diagnostics because that’s complicated.
Emma: Oh boy.
Brianne: Yes, we will get there. Okay. And so you were saying autoimmune plural, so was there anything else that started? Because you’re having thyroid, the skin…
Emma: I started having pain during sex. And eventually I just got sick of it, so I went and saw the doctor, and they’re like, “Oh, we can’t really explain this pain that’s going on for you.” Eventually we kind of came to the conclusion that I have muscle spasms, but in that process, we ended up diagnosing me with lichen sclerosis. It is where the skin of the genitals is thin and patchy and prone to tearing. So any sort of sexual interaction can cause like microtears in the skin, and they’ll heal and those create scar tissue and then they’ll tear again. So it can be incredibly painful. So we got through a lot of lube. Lube is so great and so important. Oh my God.
Brianne: Yeah. And everyone should be just using more lube. Just use more lube, everyone. Yeah, but especially, it should not be painful, something’s going on. Yeah.
Emma: Yeah, painful sex is… don’t suffer with that. It’s not worth it. And since that time, we’ve actually worked out that I have say Seborrheic Dermatitis on my scalp. So when I have the mental spoons to deal with it, I’m hoping to get a referral to a dermatologist because all the specialists you see in New Zealand, you kind of end up going through the hospital system. So [I] hope maybe something they can do for it because my head is so itchy all the time. I use coal tar shampoo to help, and it’s the only thing that’s really helped for me so far. But what else is wrong with my skin? My skin seems to have been the place that’s really picked up all the autoimmune disease, which is very annoying.
Brianne: Yeah. It’s like all of the miscellaneous ways that inflammation can happen or whatever it is is skin stuff.
Emma: Yes. Yeah. Yes, especially HS [New Zealand Healthcare System] because it’s…they don’t know if it’s autoimmune or auto inflammatory. I feel like it’s both. Any, any sort of inflammation, just, yeah…
Brianne: It’s all happening.
Emma: What else?
Brianne: Yeah. If there’s anything else…
Emma: I think that’s it for skin; I think that’s it for autoimmune right now.
Brianne: Okay. So there’s that cluster of stuff. So then, so you mentioned for you recognize BPD first. How did that happen?
Emma: Because I had started to feel relief from the hypothyroidism. It meant that sort of other symptoms could be more prominent.
Brianne: Yeah, like you could even notice?
Emma: I noticed my emotional stability was quite all over the place, and I noticed my interpersonal relationships weren’t always the best. Um, I had a suicide attempt, I think a year or two before I actually got my diagnosis. I’m such a nerd. I play world of Warcraft…
Brianne: Ah, so does my husband.
Emma: …and I [?] at the time. I ended up losing a bunch of friends for a bullshit reason, and I was so distressed that, I mean, it was…even calling it a team, just kind of dumb. But, um, silly… and I ended up on a mood stabilizer, which helped a lot with the BPD, but, I don’t know. I always had this niggling feeling that something was still off. Like I knew I was more than just depressed or anxious. It was like I just knew there was something more. And I had a friend at the time who had BPD and I noticed my symptoms were very similar to theirs. So I did some research and I was like, ah, I’m borderline.
Brianne: Or like, this sounds familiar.
Emma: It just clicked, it clicked. At the time, I made sort of eight of the nine symptoms. So eventually I tried to get back into the mental health system. I said, “you know, I want to explore this more,” and they told me, “no, you’re fine.” Essentially, if you’re not suicidal, they don’t take you. And of course I was very stable, so they’re like, “no, you’re fine.”
Brianne: And that was for you, stable also was after this new prescription happened.
Brianne: Yeah. So you’re like, well, kind of, but also…
Emma: Mm. So after that I was, nope, I’m seeing my psychologist. And at one point she had asked me, “Oh, why do labels matter?” And I had a breakdown for like three months.
Brianne: Did she mean that about diagnoses, like getting this diagnosis over? Okay. Okay. And that was hard.
Emma: Yep, that absolutely set me off for three months. Anyway, eventually I talked to her about it and she rips out her DSM V/five or whatever, and we look through it and she’s lists out the symptoms and we’re talking about it, and she’s like, yeah, you’ve got BPD.
Brianne: It applies actually. Okay. Was that validating?
Emma: Yes, incredibly. I walked out the appointment so fucking happy. I was like, it explains everything mentally with me. It explains my childhood, explains my trauma. It explains my teenage years. It explains all my failed relationships and failed friendships and everything I’ve done right up until this moment. It explains everything.
Brianne: And so with borderline, just to kind of contextualize it because I feel like I haven’t talked about it that much on the show — some of what you’re talking about is kind of part of what defines it, right? It can be defined by the way that it impacts your relationships… and also does it have a correlation, at least with childhood trauma, I believe, whatever that might mean…?
Emma: There is correlation. There is no strict scientific… they can’t say for certain, because there’s a lot of people who don’t go through trauma.
Emma: Like for myself, my trauma was emotional, rather than physical mostly. So essentially what it is, is that in the UK, they’ve actually renamed it emotionally unstable personality disorder.
Brianne: Okay. Does that feel better?
Emma: No. Even borderline feels wrong, because the whole point — you know, when they came up with this disorder in the 1980s, they were like, well, it’s sort of on the borderline of saned-ness and insanity. So they decided to name it that and it doesn’t actually communicate what the problem with it is.
Brianne: Right. It sounds very menacing, but not in a meaningful way.
Emma: And there’s a lot of stigma to it, which isn’t exactly valid or correct, actually. That’s not to invalidate people who have experienced abuse or trauma from someone who has BPD. But I feel like generally people tend to paint us all with the same sort of paint brush, like, “Oh, this person is toxic. That must mean all of you are toxic.” It’s like, no, it doesn’t work like that. Just like every sort of mental illness, chronic illness, it’s a spectrum. Some people are affected more. I could function mostly as a person. There’s sort of different subtypes of types of borderline. You could be… a lot of us talk about sort of being a quiet borderline. So for me, as I got older, I started to sort of withdraw into myself and I became very self-hating and, rather than taking out my rage on other people, I took it out on myself… So essentially it’s entirely to do with how you process emotions and how you think about your emotions and your emotional reaction to situations. It’s like having your… [?]. It’s like having it dialed up to like a hundred emotions. They hit you so intense and so hard. And a lot of suicide attempts by people with BPD are during times of extreme emotional distress, which sort of ties into the people having the stigma of us being attention seekers and crying wolf. Because you know, within hours we could be fine.
Brianne: Right. But that doesn’t mean it wasn’t real.
Emma: Yeah, no, exactly. When you’re in that moment of distress, it is so intense and you just want it to stop. And that’s what happened to me when I had lost that large friend group, because I felt like my life was over. So the mood stabilizer changed everything for me because it finally… while the ME slows my brain down, the BPD makes my brain incredibly fast, especially with the emotional stuff, obviously. The mood stabilizers meant that my emotional stuff slowed down, so I could finally start to put the things I had learnt with my DBT into a stronger course of action. I tend to sit out my emotions now. I try not to react like I had done previously. My coping techniques are so much better now.
Emma: So that’s sort of BPD for me…
Brianne: And so did anything, because you already had taken the DBT course and you had started the mood stabilizer before you saw the psychologist… I mean, therapy is therapy. But did you find that also having the psychologist that gave you that diagnosis — did that change things as well?
Emma: I think in the general sense, it was also just a validation…
Brianne: Which is huge by itself, of course.
Emma: Yeah. My psychologist is amazing. She’s never doubted me. She does agree that I have ME. She’s very understanding. I mean, she’s in her sixties or fifties or something, but it’s like, even though she doesn’t really understand what WoW [World of Warcraft] is, she puts the effort in to listen to me, and I feel like I lucked out, because she’s my first psychologist, which isn’t… you know, for some people, they go through ten. But we clicked and she’s incredibly validating. That’s one of the biggest things about her is that she doesn’t judge me. She’s never judged me.
Brianne: Yeah, and that’s a huge gift, like you say. For some reason on my alumni network recently, people were sharing therapy horror stories of therapists that they left and their reasons, and these things that we think should be a baseline for anyone practicing in any of these spaces, like being validating? Not a given at all.
Emma: I saw a therapist when I actually first got my depression diagnosis and I left after two sessions. She gave me a couple of handouts.
Brianne: Yeah, you’re like, there’s no value here.
Emma: At the time, because I just met my partner, I’d actually met him online through a local dating site, and I had mentioned this to this therapist and she’s like, “Oh, you can’t trust people on that website.” So it has been a long running joke since then. And my partner and I have been together for seven years. He’s actually been with me throughout this entire period of figuring out my health, which is so huge. So it’s just been a continuous joke.
Brianne: People meet online all the time! That’s such a weird stigma to still have in this modern era.
Emma: It really is.
Brianne: Yeah. So I know all of that stuff is still, of course, going on, like it’s an active process I was living with and managing. So let’s talk more about the ME.
Emma: Oh boy!
Brianne: Yeah, another fun thing. So, at what point for you did you start to think there’s another box here? Because it sounds like the way that you’ve been looking at this was that you were pulling apart some pieces, like “Oh, these things were hyperthyroid and these things were mental health and these things were auto-immune, but there’s still something else going on.”
Emma: After we reached the maximum dose of thyroid meds that my current doctor is happy for me to be on. He thinks that any more is actually going to swing me into hypothyroidism and we don’t really want that. So my fatigue was never explained and it’s to the point where I can’t work… and even study I struggle with. So I had just been doing sort of my own introspection and in trying to work out my life path. I actually managed to be well enough that I actually got back into the gym, which is a big problem because I crashed. That was the end of 2017 and I’m still dealing with it today… which sucks, because I loved my personal trainer so much. He’s also a member of the LGBT community as well, so we always had a good gossip.
Brianne: It’s like my social time, too.
Emma: Exactly. He’s a doll. He really is.
Brianne: What level of exercise were you doing, or like how long, how long until PEM came for you, basically?
Emma: I’d been working out for maybe nearly a year.
Brianne: Which is a long time, but energy envelopes are weird.
Emma: We had been increasing slowly, because I actually had a hernia. It wasn’t an organ hernia; it was just some fat that had come through my stomach muscles. So I knew I needed to get back into exercise because I had spent years just not very active. And that sort of led to my muscles deteriorating. So we were like, all right, I’ll get back into the gym, you know, get some fitness back up. So we were dealing with that. And then I went through some emotional stress and that helped trigger the PEMs
Brianne: They do not play well together.
Emma: No. Which sucks because I really enjoyed the gym… I never tried to over push myself because I knew I would have a long time of needing to rest afterwards, but… I had done my research on ME, but it wasn’t a serious thought for me until I had that crash. After I had that crash and I did some research, I was like, this is what’s happened to me. I have literally had that — that crash. It just sits in the gulf [?] within me and I was like, there is something up. It’s not just because I’m fat, it’s not just because my thyroid’s messed up. There’s something more to it. So I really started to look into it and I was like, this explains everything with my physical health. It just — it made sense. So I just tried to do the best I can since then, just sort of recovery and taking it easy and not stressing myself out. And then a few months ago I actually went to my doctor and I said, I want us to — because I had talked to him about ME before in the past — and I said to him, look, I want to seriously investigate this. Because he had said to me that he didn’t really see the point in going through the diagnostic fun house because there isn’t a cure at the end. There isn’t a necessarily a working treatment. He didn’t see really the point in doing that, but I went to him and I said, if anything happens to my partner, if he dies or if we break up, I need to have a medical proof of my disability in order to receive any sort of assistance from the government because otherwise they are going to force me into the job seekers program and I can’t work. There’s no way in hell I can work. So he’s like, “All right, we’ll start doing that.” And I had said to him, “Look, I also want to access disability services.” I would like possibly to have a wheelchair, so I can actually attend social events and not end up on the floor in pain afterwards. I want a shower chair because I have, as a result of everything, I have dysautonomia, so I struggle with showering. I don’t shower it in hot water anymore because I feel like I’m gonna faint and pass out and puke and my heart just feels like it’s in my throat. It’s awful. And I said to him, “Look, I know there’s no cure, but this a validation.” This is evidence. It means I’ve been doing something with my life for the past seven years, and not just bumming off my boyfriend or bumming off the government. I can say, “I’ve been disabled. I been doing the best I can.” So as a result of that, I’ve been tasked with keeping a daily log of my life and my abilities and what I get up to, and how much exercise to do, what chores did I do. I have not started it because even just dealing with the mental processing and the spoons of it. I’m just like, “No.”
Brianne: Somebody sent me… I was doing some symptom tracking earlier this year in like January, February, I think, in our late winter. And I had posted about it on Instagram and somebody had responded and sent me their system for tracking their symptoms, and it was amazing. It was like they use one of those graph notebooks and they had color coding for how they were doing each day and all their symptoms and all their activity, and it was so incredible. But it was also so cognitively intensive. Because that’s the thing, right? Sure keeping this symptom journal or keeping a journal in general about how you’re doing and your activity and all that stuff, it makes sense. Of course it makes sense. But doing it and doing it in a way that’s meaningful requires a ton of forethought and adjustments and analysis. And even then you can end up with something where like… can we really even compare what you wrote on these two days? Because if you just are like, “Tired. Tired.”
Emma: Exactly. My life, I do housework, I do my hobbies. Sometimes I will cook dinner. We’ve actually changed how we eat so that it’s easier for my partner to cook, and it’s a lot of food that doesn’t involve prep. It’s like we have bag salad, some sort of protein, sometimes we have garlic bread. That is our normal dinner, at this point. And it works for us because we’re both picky eaters. Oh, I have an eating disorder on top of everything. Sorry. My days today is so consistent. It’s like, okay, shower every four to five days. And the housework just varies. Okay, today I did no housework, but then it’s like the next day, I did the trash, I cleaned up our dining to room table, I did dishes. And then the rest of the time is spent engaging in more social and more brain stimulating stuff. Like I said, I play wow, I am active in fandom communities, I am sort of popular in specific fandoms for content creation like gifs on tumbler, I talk to my friends a lot. All that stuff I enjoy so much more. And it’s like every two weeks occasionally I see my psychologist. That is it. My life is so boring and so consistent even in its inconsistency it’s consistent. So it just feels pointless to keep an activity diary because it’s the same. I could just write out one day and be like, “Alright, that’s just a general day to day of my life.”
Brianne: Yeah. This is how it goes.
Emma: And I have to do it because in order… my doctor wants to send me off to someone else, to someone who’s more specialized, not necessarily specialists, but someone who knows more about it than him, but I have to give proof that he should see me. So I have to do this log. And it’s like, “I don’t want to.”
Brianne: Yeah. It’s one more thing. For my formal POTS diagnosis, which feels unnecessary for a whole bunch of reasons, but I had to do a take home holter. So like the EKG, you have all the things, you wear it. It was for two days for me. But in order to see if it’s connected to POTS or not, you have to write down what you’re doing every time you feel symptomatic. So every time you feel like your heart rate has gone up, write down what you were doing.
Emma: Standing up.
Brianne: Yeah. And this was just to qualify for the tilt table test. So I saw a cardiologist, he had me do this holter monitor with the journal in order to get referred to another cardiologist, an electrophysiologist, in order to get the tilt table test, which then only gives you the POTS diagnosis. And it was like, “I already know.” This isn’t going to tell us anything, and what I’m writing down is literally like got up to get a glass of water because I know I did it and my heart rate went up to 135. Or like one of the two days I sat up at the computer for the afternoon, so I knew my heart rate was higher. And it just feels so artificial.
Emma: Yes, it does. It really does.
Brianne: Yeah. We’re really monitoring something, but I’m just writing this down so that you have this document of something that I’ve already told you because I already know this is happening.
Emma: It’s like they don’t want to believe you unless you have proof.
Brianne: Yeah. But the proof is still just based on believing you. That’s what’s so strange about it. No one’s here watching me to see if what I write down is true and it was true. I’m not lying, but I wasn’t lying before either. And that’s why it’s so weird. Yeah.
Emma: Exactly. I do not want to do this diary at all, but in order to advance the process of getting this god damn diagnosis, I have to do it. Which means I get to go through all the fun stuff of having my thyroid checked again and being tested for everything under the sun.
Brianne: Yeah. Because you have to. It’s an elimination diagnosis still, so you still have to eliminate everything that might include fatigue.
Emma: Which I feel like I’m going to get told, “Oh, have you tried losing weight?”
Brianne: Yeah. Yeah. Probably
Emma: Which I’ll be like, “My dietician has banned me from losing weight, but okay.”
Brianne: Yeah. It’s not that. That does bring me to a related question though of… different people cope with all of this stuff differently, obviously. Have you gotten into any of the lifestyle experiment stuff? Like anything that it could be, like changing your diet a lot or…
Emma: Oh, God, yes.
Brianne: Like whatever the internet tells you that you should try, if you’re experiencing fatigue. Basically it’s a long list.
Emma: Well, I refuse to do yoga
Emma: But we did actually work out that somehow I’ve become intolerant of gluten, so I try to be gluten free as much as I can, barring garlic bread. My body can fight me on that one. What else have I done? I’m on a holistic medication. I do a lot of the DBT mindfulness stuff because I use that stuff to cope with my chronic illnesses as well.
Brianne: It’s overall helpful for you, it sounds like.
Emma: Yep. Yeah. I’ve tried various things all throughout the years.
Brianne: But nothing that really stands out or stuck, it sounds like, which is pretty normal, I think. They’re like phases of experimenting.
Emma: The only real sort of thing… it’s more the social side, the more mental side of it rather than any sort of physical stuff. It’s been more about recognizing my limits and self care and self compassion is a huge one. And it’s only been in this last year that I have actually said I’m disabled. I battled with my own internalized ableism for years, and I still do now. Like I’ve said to my partner before, I experience severe anxiety when I have to be on public transport, if I’m sitting down, because I know if I get asked to stand up and I stand up, I am going to possibly hurt myself. Not in a self-harming, deliberate way, but I might actually faint. I don’t know.
Brianne: Yeah. It’s not safe.
Emma: And which sort of leads me into the whole getting this diagnosis and all that can actually give me available ways into getting a wheelchair so I can go to social events and participate in society more. Because right now I don’t. A close friend of mine who I’ve known since school got married. And, so we were there from… we got on the bus to go to the venue at one o’clock and by 9:00 PM well, everyone is up dancing and they’re having a great time and all that. I was laying on the floor and the reception hall on my phone trying not to overheat. I was in severe pain. Because if I sit down for too long, I’m in pain. If I stand up for too long, I’m in pain. If I lay down for too long, I’m in pain. So I’d been sitting for hours at that point. So I was on the floor in pain. I was just waiting to get on the bus home. And I just couldn’t enjoy his wedding as much as I should’ve been able to.
Emma: So that sucked. So I’ve found sort of accepting… another thing with DBT that I really love is radical acceptance. It is accepting a situation even if you can’t change it, even if you don’t want to accept it. It’s like, “I accept this reality.” So for me, I radically accepted the fact I’m disabled, and that’s how it is. And I wish I wasn’t, but this is it. This is my life. And so from here on, I am going to do whatever I can to accommodate for myself. I’m going to be self-compassionate, I’m going to care for myself. I will fight when I can for myself. I will communicate to others the situation.
Brianne: Yeah. I think that all sounds really powerful. It’s a huge shift, like you say, and internalized ableism is real. It’s really real. And there’s a difference between acceptance… like you’re saying, accepting something doesn’t mean that you want things to be that way. And I think that that’s a bigger kind of cultural misconception that I think we also tend to take on. And I know, I’ve had this experience in my own life, trying to explain that nuance to people that I’m close to of like, “I’ve accepted this. That doesn’t mean that I’m giving up on my life. It’s not the same thing. It just means that I can’t spend every minute of every day and every dollar and all of that fighting all the time. I’m not getting anywhere. It’s exhausting. It’s expensive. Why am I doing this?”
Emma: It’s also bettering your life because you can now put the energy that you’re putting into fighting it, into working with it. Like at the moment, I’m actually wearing a scarf developed by a company that’s got an ice pack in it because I overheat as a result of my dysautonomia. God I wish I was one of those people that could be cold all the time, but no.
Brianne: Oh, that’s me, by the way. You’re wearing a cooled scarf and I’m wearing heated socks.
Emma: They just came out with one that goes across your head. It’s for migraines. I’m using it for cooling. And my partner and I have just invested a lot of money into getting an air conditioning unit, which is not common in New Zealand at all. And I pray to it, everyday. I’m like, “Thank you for existing.” Puts on icy cold blast. So all that kind of stuff is me working with my disability. It’s me accepting and just going, “Yep, I need this to live comfortably.” We eat bagged salads, and I know there are people out there who will absolutely fucking hate me because I do. Because plastic. “Oh, you’re going through so much plastic.” It’s like if I didn’t eat bagged salads, which I adore, I would not eat any vegetables at all because I do not have the energy to prepare food constantly. When I try to, I would have vegetables just mold on me and go off because I couldn’t cook them in time. And having a bagged salad is so convenient and it works for me. And my partner, with us being picky eaters, we’ve really picked up a routine that works for us. And it’s like, “Yeah, okay. It’s not the most environmentally conscious thing, but I’m disabled.”
Brianne: And I’ll also say… I agree with you on its own. And I will also say that, I’m sure this is different regionally, like region by region, but most people’s produce isn’t all grown locally. So actually most produce has a huge environmental impact just because of refrigeration and shipping and so buying produce that constantly goes bad in your fridge isn’t carbon neutral. There is a ton of actual environmental impact in every choice that we make, which is what makes it impossible to navigate. I’m not at all putting a value judgment on it, but it’s not more environmentally friendly to buy a whole bunch of plastic free vegetables that you’re not able to eat. It doesn’t actually work that way. So I don’t think it matters. What you’re saying would still be true, even if this weren’t the case. But all of the arguments about around plastic… like, “If there’s no plastic, then it’s fine.” It’s so much more complicated than that. And these arguments are exhausting. We shouldn’t even have to have these arguments, but I know that we do. And I know that people will show up on Twitter all the time about it.
Emma: Oh, no, the banana has been pre peeled. This is the worst thing to happen to humanity. There’s bigger things to be fighting for like corporate greed and governments not putting their money where their mouths are in terms of greenhouse emission and all that kind of shit. That’s the stuff that matters and is contributing to pollution so much more. It’s totally off topic, but for New Zealander, I’m very rare because I actually like nuclear power because it is the greenest, most energy efficient, and cleanest method of energy production we have. But people have such a negative stigma about it that they’d rather burn coal then explore the hugeness and the huge array of what nuclear power can offer us. Because nuclear power isn’t just steam fueled turbines from a reactor. There’s also things like molten salt reactors, and that kind of system is completely different from things like Fukushima and Chernobyl. And even all that stuff that’s very old, outdated technology. But because people have now developed a fear of it, it means we’re not developing safer and better systems for our future, and that’s where we’re not looking forward to our future.
Brianne: Right, right. It shows up in these big and small ways.
Emma: And as a disabled person, it is enraging.
Brianne: Yeah. Oh, yeah. Like a lot of this stuff… just redirect your energy, everyone. I agree.
Emma: Plastic straws.
Brianne: I know. That’s the one, right? That’s the one that shows up the most right now.
Emma: Which is funny because I use a metal straw with a silicone tip on it.
Brianne: Yeah. I’ve seen those.
Emma: I’m very lucky to be able to do that because I know there’s disabled people who can’t, but that’s my tiny small contribute.
Brianne: Yeah. It’s your trade off with the salad.
Brianne: Yeah. I use metal straws too, but I have a partner who can clean them if I don’t clean them. So there’s a lot to it. Awesome. Is there anything about chronic illness and the whole world of chronic illness that’s on your mind that we have not talked about somehow today?
Emma: Possibly the mental impact of it all. I think for me, the reason why there was such a huge focus on the mental aspect of it was because a lot of chronic illness stuff does get blamed on mental illness, but it’s almost like… I’ve talked about this with doctors before and my psychologist, but it’s almost as if the medical profession treats the head and the body as two separate entities when really it is a whole. Like ME, it’s not a mental illness. It’s an actual problem with my brain. My brain has inflammation, so it does impact me mentally, but it impacts me physically. So to blame it all on mental illness or as a mental problem is really harmful because it is more than that
Brianne: And people get bad care because of this, I think.
Emma: Yeah, just look at the UK. I recently read… I’m going to butcher the title, but The Girl Behind Dark Colored Glasses or something.
Emma: And I cried. Because as bad as I have it, the abuse she suffered. While I can relate to having the same condition, and while I’m thankful that I do not have the same severity, it was the abuse that just sent me off. Because I know go off a bit and I crash even harder than what I have done. I could be in that situation and it’s just… oh my God.
Emma: Honestly, if people have not read that book, they should because it’s so powerful.
Brianne: I will put a link in the show notes for that one.
Emma: Even thinking about it makes me want to cry right now.
Brianne: Yeah. I haven’t read it yet, but I know the book that you’re talking about.
Emma: You should read it. It’s amazing what she did to be able to write it. It’s like your body can be absolutely destroyed, but if you still have that spark that things can change, you can get through it. Like you may not ever be abled again, but you can still do it. If that makes sense.
Brianne: Yeah, it does. I think sometimes we get so caught up in the idea or the messaging that getting our health back or becoming abled again is the goal and that doesn’t have to be the goal actually.
Emma: Yeah, that’s what I’ve sort of been working on with my own acceptance of being disabled is that I might never be abled again. And you know what? That’s okay.
Brianne: Yeah. And if that’s true, then what is the goal and what are we working towards or whatever? I know these are kind of lofty questions, but a little bit of what I’m thinking of, from what you’re saying is like… and I’ve talked about this with a lot of people now. But that doesn’t mean that we can’t make some meaning for ourselves or find purpose or find something that means something to us. And it doesn’t have to be… I don’t mean this in an inspiration porn way. I don’t mean you need to go out there and overcome everything.
Emma: “Educate the abled on how disabled people are people too, and how we’re magical, and people should listen to us.” It’s like, “No, we should be listened to irregardless, but okay.”
Brianne: Yeah. Yeah. And there’s that. But it’s just like if wherever you are, there are things that you can find joy in. Sometimes not. But we get told so much that the only way that we can be happy is by getting better, I think, sometimes even pretty explicitly. And so part of the work too is what can I do where I am right now? And that’s it. It’s a real open question.
Emma: Yeah, even my own hobbies, I’ve focused a lot of the energy I had into more creative things. Like I said, I’m big into fandom. I like to content create. I also make soap, which is difficult given fatigue and all that. But I still have a lot of fun making soap. Like I just made a soap inspired by the ’80s because of American Horror Story because I’m obsessed with that show. I made a soap for my favorite actor and hopefully I can actually send it to him. I need to bug him about it. I need an address. So all that stuff has been amazing for me mentally, and it’s stimulating because even soap making, there’s a lot of science that goes into it. And I’m always thinking about designs and things I can do and creativit. And there’s a lot of soap in my house.
Brianne: Well, soap is a useful thing.
Emma: Which helps because of my autoimmune conditions actually. Store bought mass produced soap is actually really damaging for my skin, very drying. And so I switched to sort of artisanal soap, handmade soap. And because it’s not got all the glycerin and stuff actually removed from the soap, that stuff ends up on my skin, and my skin is like the best it’s ever been.
Brianne: It likes that. That’s a great thing to be able to tinker with, basically. Yeah. Bodies, what are they up to? Amazing. I don’t have any more questions. If we’ve covered kind of like… I feel like we basically got caught up and got into some of the big stuff. So thank you. Thank you for taking the time to talk to me.
Emma: This is so tough for me to say, but… or a little silly or whatever. It’s great to be able to talk about chronic illness stuff because my partner is very over it. He doesn’t want to talk about chronic illness stuff, and I’m just like, blah, blah, blah, blah, blah, blah.
Brianne: Yeah, yeah. I know what that is like.
Emma: Being able to talk about this stuff is just so huge, and I also love podcasts.
Brianne: It’s a bonus.
Emma: Yeah. So it’s just great to actually have a platform and just to be able to share stories and know you’re not alone with any of this stuff and talk.
Brianne: Yeah. I agree wholeheartedly. It’s really easy to let it… but it all starts to fester when you’re surrounded by people who don’t really get it, even with partners, even very supportive partners. They’re just like in a listening role. It’s totally different because they don’t have the same experience. Yeah.
Emma: Yeah. It took, it took him a long time to actually understand what I meant when it comes to my energy.
Emma: He loved the spoon theory so much. It helps so much.
Brianne: Yeah. It’s a very helpful tool for sure. Because that’s what it’s like. It’s random a little bit, but you can see what’s happening. Yeah. Yup. Well, thank you.
Emma: I think that’s everything.
Thank you for listening to episode 57 of No End In Sight!
You can find Emma on twitter @impossumble_ and on instagram @impossumble, 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.
Plus, don’t forget to check out the new No End In Sight collection on Medium where you’ll find stories and essays about life with chronic illness. You can find that at medium.com/no-end-in-sight.
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.