Annie Smith talks autism, ehlers-danlos syndrome & feeding tubes.
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Transcript
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 Annie Smith about autism, ehlers-danlos syndrome, feeding tubes, and incorporating diagnosis into your identity.
And as a quick content note for this episode, we do talk a fair bit about weight loss in this episode. Both as a symptom and as something that inspires a lot of unsolicited feedback.
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.
[guitar riff]
Brianne: So I like to ask, how was your health as a kid?
Annie: My physical health as a kid was quite in the background. I’ve got autism, which wasn’t diagnosed until I was 14, so there was a lo going on around that. But I think there’s a lot of stuff that now we look back and go, “Hang on, that was a signal that was just put down to the autism.” Like I’ve got really bad coordination and problems with joint pain and clicking and stuff that was quite present from very early on, it was all put down to, “Oh, she’s uncoordinated cause she’s autistic. She’s complaining about pain because it’s something else,” kind of thing. And I also had the classic, “It’s growing pains,” from the doctor quite a lot and from my mum and dad. “It’s growing pains.” And then I got to 20 and it was still there and I was like, “I’m not growing anymore, so…”
Brianne: “So what’s going on?”
Annie: Yeah, exactly. I think that’s what I’ll say. Because I’m autistic, I assumed a lot of the time that other people go through the same things I do without kind of questioning it. So one of the great examples is I’ve got no sense of smell, which didn’t become prevalent until I was a teenager, because before that, I just assumed everyone else was the same as me. So that was when I kind of started questioning things when stuff like that came about. But, regarding pain levels and digestive system and all that kind of stuff, I just didn’t really know that there was anything different.
Brianne: Yeah.
Annie: Until it became much more of a problem.
Brianne: Yeah. And it’s so hard, like you say, and as a kid, it’s hard enough to kind of describe what’s going on and then to also translate that or to figure out how to compare that to other people’s experiences.
Annie: Yeah, definitely. And I think it’s really easy as well to… people dismiss kids a lot. They go like, “Oh, they’re complaining because they’re bored,” or you know, “They’re complaining because they’re lazy.” And it’s like, no, I always hated PE, physical education with an absolute vengeance. And. I think I was put down to being quite difficult and lazy, and one of the things I really hated was getting changed in front of people. So that was a big thing that got focused on, whereas it actually, I was having kind of like asthma kind of attacks in the background without anyone knowing, and that only became obvious when I was an adult as well. So yeah, lots of little things going on.
Brianne: Yeah. The in retrospect stuff can be so interesting. And also I think… I want to keep going, but I think it’s also really interesting because you mentioned these physical symptoms kind of being attributed to or explained by the autism diagnosis. And it’s so… I don’t know yet, although now I’m really curious, how often that happens with autism specifically, but I know there’s so many diagnoses that people have that are really… can have so many different presentations where this happens. That it’s like, “Oh, you have pain? We already diagnosed you with something, so we won’t explore it further.” Or like, “Oh, you’ve had digestive problems? We already diagnosed you with something. So we won’t explain it further.”
Annie: Exactly. I think with autism, it’s such a huge thing as well because we know that I think… I can’t remember the exact number, but there’s a massive proportion of people with autism have digestive issues, which is just accepted. There’s no actual reason for it. There’s no understanding of it. It is just, “Oh, your autistic, you have digestive issues,” but there’s no link whatsoever. Whereas, we also know anecdotally that massive amount of people with autism are hypermobile. And that’s not something that’s looked into either, and then you go,”Well, how many of these people with digestive problems and hypermobility actually have EDS, which is often linked to autism?”
Brianne: Yeah.
Annie: No one’s putting the picture together at all, which I find very surprising.
Brianne: Right, yeah. Like is this actually a really common comorbidity that is getting kind of ignored?
Annie: Yeah, exactly. Actually the digestive problems might be something completely different.
Brianne: Yeah.
Annie: But it’s not… it’s just accepted, even though there’s no scientific explanation for it. Yeah. It’s really weird.
Brianne: Yeah. Right. What a fun mystery. Ah, okay, so then when did you start… either you start to look into things or start to take things more seriously or realize that it might be… there might be more going on?
Annie: About year and a year and a half ago now, it was October, 2018. Oh no, October, 2017, sorry. I started being sick. And I could not stop being sick, I could keep very little down. I was probably eating about half the amount of food that I was before, and I started losing weight really quickly. So I went to the doctor. But three months before that, I’d started following someone on Instagram who had a child with autism who also had EDS. And then when I started being sick, it was like something in me clicked and I went, “Hang on.” And I started looking into EDS more, and realized… I had this horrific few months where every single day there was another symptom or another thing of my body or something else that was linked to the EDS. Or was caused by it and this kind of realization that this is what’s going on and actually this is huge. And it was kind of like seeing your body fall off a cliff and not being able to do anything about it because all of these puzzle pieces were coming together. So I went to the… my primary doctor, my GP, and he… I insisted that I get referred to rheumatology and something that people don’t necessarily know… I’m sure, not everyone works like this, but most GPs in the UK, if you absolutely insist on a diagnosis, they will put it forward, and if not, you can complain. So I sat there and I was like, “I need to be sent to a rheumatologist.” And he referred me, didn’t know what EDS was, had to Google it in front of me.
Brianne: Sure.
Annie: I told them about the Beighton scale, and he didn’t know what that was. And then said, I wasn’t hypermobile because I can’t put my hand like that backwards onto my wrist. It’s supposed to be…
Brianne: Like the thumb one?
Annie: Yeah, it was the thumb one, but backwards. I couldn’t put my thumb backwards, and I was like, “Well no, I can’t… a few people can do that, but that’s very rare.”
Brianne: Yeah and hypermobility… I know people talk about this about the Beighton scale, but hypermobility isn’t only those nine things. Some people have it…
Annie: I know! That’s bizarre, isn’t it? Most hypermobile joints aren’t included on the Beighton scale at all, but even rheumatologists only go by that, which I find really bizarre. But. Yeah. So we… I got the referral, at his chagrin. I later saw the private letter that he sent to the rheumatologist cause it was on her screen when I went to the appointment and at the very bottom it says, “she has no sign of hypermobility, dah, dah, dah, dah, dah. Insisted that I refer her.” And the very last and its own paragraph sentence goes, “She also has mental health issues.” And I was like.
Brianne: [groans]
Annie: Really bad, isn’t it? Terrible. And the rheumatologists sent this beautiful letter back to him saying, “Thank you for referring this lady. She’s severely hypermobile,” and everything like that. But because I’d seen the original letter, I knew how loaded all of those comments were, but I never saw him again. And everyone else has been really great. I’ve actually been really lucky cause I know some people with EDS have awful problems being discredited and stuff.
Brianne: Yeah.
Annie: I went straight from rheumatology to genetics. As I was walking out the door of the rheumatologist’s office, she went, “Oh, I might as well refer you to genetics as well, because of one of the things that you ticked here.” And I was like, “Okay.” So that was literally the last 30 seconds of that appointment, I got through. I went to genetics. I was verbally diagnosed with EDS on the spot and did all the genetic testing, and after a year and a bit, this last January, I got the formal diagnosis of, hEDS, but in that time, my body completely fell apart because the amount of weight that I lost destroyed everything that was holding my joints together, because I lost so much muscle. And they leave you and leave you. I got to the point where I could not drink water and that was when I was admitted to hospital. Because of waiting lists and letters not going through and everything like that. I lost 20% of my body weight, which is really dangerous.
Brianne: Yeah.
Annie: Yeah, and as soon as I got taken into GI, they were like, “Okay.” Within weeks I was in hospital, whereas I had taken eight months to get to that point. So it was, yeah, really crazy journey.
Brianne: Yeah, and it’s so strange that things can happen so slowly and then so quickly, kind of.
Annie: Yeah, exactly. Yeah. I found, I’ll say, within a few weeks I had my first NJ tube, and then I was with that for two months. Then I… it was kind of thought like, “Oh, you don’t need it any more.” So in August… at the end of August, took it out, and I was eating okay and gained quite a bit of the weight back and was doing all right and sort of stable. And then in January, I started being sick again.
Brianne: Yeah, I was just going to say, in addition to the feeding tube, were there other interventions to try to improve what was going on? What kind of… why do you think that at that time it was even possible to get back to eating? What changed?
Annie: Well, the explanation that was given at the time was that sometimes the body gets into this cycle of malnutrition and dehydration, and with the nourishment, I was on 2000 milliliters of fluid a day and half of that was feed. So I was on… everything I got was from that, which built my body back up, and then my body got out of that cycle and got back to eating. And that was the explanation I was given until I started being sick again in January. And then we tried to treat it then with medication, and I was on five new medications, most of them kind of over the counter stuff, but in addition to everything else I’m on… it was quite a massive amount of pills to be taking. All of it made other parts of my body go wrong. And one of them I was wildly allergic to as well, so that was helpful. And after a week and a half of that and establishing that that just wasn’t working at all. They were resigned to that, that I would have to have another tube. I lost another 15 pounds in eight weeks, went way down. And by the time I was admitted to hospital, I wasn’t really tolerating anything anymore.
Brianne: And what… just to get medical for a second… and so what was the digestive stuff? Is it a combination of everything? Just because there’s so many different ways… I know that people can struggle with that. There can be pain and cramping. There can be slow digestion, like with gastro-paresis or there can be nausea. There can be… what family of stuff was that in for you?
Annie: Oh, I get it across the board. Yeah. The slow digestion is a huge thing for me, but I think it’s more a problem in my bowels rather than my stomach. My gastric doctor has said that he thinks that as a sudden level of gastro-paresis going on, but it’s not diagnosable. I’m not diagnosed with gastro-paresis. But he said I have had an emptying test where you have to eat radioactive eggs, for me it was… or radioactive porridge as well, really weird stuff. And I had that and that came back normal. But he said if we did seven of those, probably three of them would be abnormal. And it just depends on the day, cause it fluctuates and because it’s quite mild in me. It does fluctuate quite wildly. Which accounts for the fact that some days I can’t eat a thing without being sick, and other days, I can have half of the amount of food that I should have and then supplement it with feed. But there is no explanation. I’ve had every single, well not every single, but I’ve had probably seven or eight different tests just on my digestive system, ranging from an MRI to a test to see what bacteria is going on in my bowels. All sorts of different things. And all of it’s come back normal. And the general consensus is that it’s because everything is too stretchy. And while everything’s too stretchy, it just doesn’t work properly.
Brianne: Yeah. Yeah. Cause it can just cause all kinds of stuff. And I know with EDS research is so low that all of the different places it could have an impact, we probably can’t even imagine yet.
Annie: Yeah, exactly. I don’t have a single organ system that isn’t effected as well, so that’s brilliant. But yeah, you get some really amazing phrases, like the one that they’re running with at the moment is “erratic bowels.” That’s great. Like that really sums it up. But yeah. Yeah. There’s so much going on that you kind of go in and you go, “Well, take your pick.”
Brianne: Yeah. Yeah. Okay. And so that was, you said January and you got a tube placed again, and it sounds like…
Annie: Yeah I got a tube placed again in March. Yeah.
Brianne: Okay. Yeah. Oh, right. So January was the… you were eating and supplementing.
Annie: That’s when it started yeah, and then it all just fell apart again.
Brianne: Yeah. Yeah. And I can only imagine that in addition to all of the physical stuff, eating is so fraught with health anyway, that once you start to have problems with eating, it’s like the anticipation around it can make it harder, and the worry around food and weight loss and, “Am I doing the right thing?” in addition to the actual physical discomfort.
Annie: Yeah. And the social and mental implications of it are crazy as well. Cause in my family, food is huge, food is the socialization thing, it’s the comfort thing, and everything, and not in a really unhealthy way. I think most people in my family have quite good relationship with food, but our social lives in my family are built around it. Which means that when we go out, everyone’s eating, or what I always used to do with my mom was going to get coffee and cake and stuff like that, and I can still drink coffee most days. I don’t have caffeinated coffee, and I can’t have dairy milk and all these kinds of things. But I can still do things like that, but when I go to theirs for dinner it’s the most uncomfortable situation ever. Whereas socially, the weight is huge. And I got people when I was at my absolute worst last year, and I… half of my hair had fallen out, and I looked gray, and my skin was awful. I had people coming up to me going, “You look amazing. What have you done? How did you lose the weight?” And I was like…
Brianne: No.
Annie: It’s crazy. It’s the only thing that people see. And then I also get people going like, “Well, don’t gain too much weight back.” And you’re like, “…” It’s crazy how much people feel that they can just comment on your body.
Brianne: Yeah. And project their values onto your body where it’s like, “I didn’t want to lose this weight. It does not feel good. You telling me it’s good is very confusing.”
Annie: Yeah. Really confusing. Yeah. Cause you get this affirmation about it and then you feel like… you get worried about gaining weight because of that. But then you know that losing weight also means that you’re ill and it’s a massive signal of your illness and how bad your body’s getting. And I know that every time I lose weight, I lose more muscle and I have more joint problems and stuff like that. So there’s so many different things at play, socially. It’s a really bizarre experience. Yeah.
Brianne: Yeah, yeah. Now I am remembering about… cause I haven’t had that kind of an issue. I did… I went on a very specialized diet at one point for health reasons. And I didn’t… I had never heard of a ketogenic diet at this time, but it definitely was ketogenic, and I lost a lot of weight very quickly. And it was like… yeah, people just comment on it all the time and you’re like, “I don’t…” Thanks is the socially appropriate answer, but it is not how I feel.
Annie: Yeah. Also cause you don’t want to link it into a conversation with them about how ill you are, but you also feel that you can’t leave them going like, “Wow, they’ve done something amazing.”
Brianne: Yeah.
Annie: But I had people going like, “How did you lose it?” And I was like, “I’m ill. I can’t eat.”
Brianne: Yeah. Like, “Trust me, you do not want to try this diet.”
Annie: Exactly. Yeah. And now I’ve got a feeding tube, it changes it completely again. And the social factors of that are really different and, yeah.
Brianne: Yeah. How is that adjustment? Partly it’s, obviously it’s a physical representation of what you’re experiencing plus feeding is different.
Annie: Yeah, absolutely. I think it’s quite… you feel quite naked because before I could choose who I told that I was ill and not everyone kind of had to know. And sometimes I’d have braces on my knees or something like that. But then a lot of people, who exercise a lot have that cause they’ve had sporting injuries, and then it’s kind of seen as, “Oh, they’re really sporty.” And that kind of thing whereas a feeding tube is a feeding tube. There’s no way out of that. The people I find the worst are adults. Children will look and they will stare for a little bit, assess it, take it in, and then move on. And that might be five seconds. And then if children really are looking or they want to ask about something, alright, then that’s totally fine. And I think it’s really good for kids to be around more things like that because it becomes more… something that they cannot decide a bit more.
Brianne: Yeah.
Annie: Whereas there are some adults that just can’t help themselves and literally cannot look away. And I’ve been in situations… I was at… I was standing on a train platform, waiting for a train and that was a guy that would look at me for five seconds straight and then look away and then immediately look back at me. He just couldn’t help himself and I was like, “What are you doing?” So I literally just walked off and moved somewhere else. But yeah, you only get things like that from adults. Children are so much better at just dealing with it. Yeah.
Brianne: Yeah, yeah. And I have experienced that with using a mobility aid where, “Oh, I’m using a cane right now.” And if a kid asks about a cane, they’re usually just genuinely curious and will ask really directly versus even just… adults will ask about it differently, like come up and be like… strangers, “Did you get in an accident?” It’s like, “I don’t see how that’s any of your business.” It’s really different for a kid to just be like, “How come you have that stick in your hand?” Or like, “how come you have a tube tucked behind your ear?” Compared to… I don’t know, the tone or the trying to make sense of it or the something, just feels different. Get it together, adults.
Annie: Yeah. I find like… cause I used crutches for a while, and that is so different because people suddenly gave you the help you need, and they’ll let you get on the bus first. Or the bus driver will wait for you to sit down before he goes off, or if you need a seat somewhere, someone will get up and give you one. And this is help that you’ve been needing for months and months before that happens. And then you finally get to a point that you have to have crutches and you’re like, “Where was this before?” Because now I can stand for a little bit longer because I’ve got crutches. And it’s this big paradox in a way. But crutches were a lot easier because people can relate to them so much better. And it’s not such a strange thing. So you get other people with crutches waiting at the bus stop as well, and they’ll be like, “Oh, you get on first, you’ve got two, I’ve only got one,” and stuff like that. And it’s just not something that people feel afraid of, I think.
Brianne: Yeah. Crutches, specifically. I think, like you said about braces, crutches specifically people use for so many different reasons that it can be more normalized or less intimidating. You also might have a sports injury or whatever. Yeah.
Annie: Exactly. Yeah. And I think because of that, the way people ask is a lot calmer, whereas when you’ve got something a little bit more invasive or a little bit more unusual, they’re like… they feel weird, and that makes you feel weird. And then it just kind of bounces back and forth between you and that’s always a bit of a problem. But it’s also how you explain it I’ve come up with loads of different lines for how I explain things to different people depending on the context and stuff. Yeah. Navigating illness socially is a huge minefield, for sure.
Brianne: Yeah, definitely. I mean, like you said… preparing some stuff and figuring out what you’re comfortable saying and the tone of the conversation and if you care about educating that person. And so it sounds like the more severe stuff is pretty recent, even though you can look back and see that it’s been going on for quite a while. So how has that impacted other corners of your life? Were you working or… what were you up to before and what are you up to now?
Annie: So I’ve been on sick leave for years, which was initially because of mental health reasons. And then became something that was coming up for review, and then I got really ill again. But I was doing a master’s degree because I get as a special type of benefit in the UK that you can study while you’re on sick leave, and it’s fine. So I was doing a master’s degree, and that’s when everything started. It was the month I started my master’s degree, so there was probably a degree of stress activating things and stuff, but equally might just been a complete coincidence. And then I did a full time master’s degree the entire first year of me being severely ill, I wrote my dissertation from my hospital bed.
Brianne: That sounds like fun.
Annie: It was hardcore. Yeah. Then I took six months off with the idea of, “I’ll get things kind of sorted a bit…”
Brianne: Right.
Annie: “And then I’ll have a bit more of a game plan, and then I’ll go back.” And cause I finished my master’s degree. I got it. And that was all kind of sitting there. Now the last month I started my PhD and nothing’s sorted, everything’s falling apart. We’re exactly the same place we were last year, but we just carry on anyway. Yeah.
Brianne: Yeah. Well it feels good to have something to do. You know? I think… cause one of the things that comes up so much, when I’m talking to people, on the one hand it’s really messed up that it can feel like work is a part of your value and you need to do that and fuck capitalism. But on the other hand, one of the things that can be so hard about being sick is when you have trouble moving or you have trouble thinking or you have trouble eating, you want something to do that is important to you.
Annie: Yeah, exactly. I used to be a teaching assistant for disabled children. That was my main job, and I always intended to go back to that while I was doing my PhD to fund it and also have that kind of side of my life that was something I loved doing. Yes. I always intended to go back to doing that work. And that was something that I love doing, and the job satisfaction of that is massive and very immediate because you teach a child who kind of can’t speak. I remember the first time I had a conversation with a child who couldn’t speak but was learning to use a PECS communication system with visual pictures. And I had his first-ever conversation with him and that kind of expression of this reciprocal relationship between the two of you, where you’re working really hard for him, but he’s also really working hard for himself as well is amazing. I always wanted to go back to that. I wouldn’t be able to do anymore because I can’t physically do it. One of the massive parts of that was restraining people, because when the more ambulatory kids, or… I worked with kids who were really, really, troubled and had just gotten out of prison and stuff like that. And obviously you need to be able to keep everyone safe. And, I just wouldn’t physically be able to do it anymore. So I can’t put them in a position where I can’t keep them safe.
Brianne: Right.
Annie: And that’s really hard. It’s hard on multiple levels because that was something that I valued about myself. It wasn’t really about the work that I was doing. It was more just doing something for someone else. And being in a place of responsibility for other people’s children was always something that honored quite a lot. So the fact that I can’t do that is really hard, but I think equally, I always wanted to go down this path anyway. My intention was always to go and get a PhD and do that and through this I found ways that I can do… I can make more of a difference by working in the background. I do a lot of research, and my research career kind of has two strands where I am an English lit PhD, but I also do a lot of autism research, and I’m quite involved in different charities and that stuff. So it’s… you find other ways that you can make a difference and yeah, I kind of agree with the output problem that your worth is based on what you’re putting out there. And that doesn’t really work for most people, I think. But it also doesn’t make people happy.
Brianne: Right.
Annie: Even people who are completely able-bodied, the fact that they only get reward when they work really hard rather than, when they kind of spend time with family or have a lazy day and stuff like that. That shouldn’t be something you feel guilty about. It should be the core of your life. And then if you’re doing something that you enjoy or that makes you feel like you’ve achieved something, then that’s really great as well, but that shouldn’t be something that society imposes on you. That should come from yourself.
Brianne: Or like at the level of survival that it is right now.
Annie: Yeah, exactly. If you don’t work, my financial situation depends on me and my son being ill because if we aren’t a high enough degree of disabled, we don’t get any money anymore. And that’s really messed up. The fact that I’m kind of going like, “Well, I need a report from that doctor’s appointment because they’re going to ask for it later.” And that kind of thing is a really weird position to be in, for sure. Yeah.
Brianne: Yeah, and especially I think across the board because it works a little bit differently in every country that has a disability safety net. But I think universally, either you’re so disabled or so sick that you can’t do anything, and then you’ll get maybe the minimum amount to survive in a lot of places.
Annie: Yeah.
Brianne: But as soon as you get to a place where maybe you can work sometimes, and with chronic illness, this is so common, right? Where you’re like, “Sometimes my body works, sometimes my brain works. Sometimes I have a week or a month or even years where I could totally put energy into doing something that someone will pay me for.” But as soon as you lose your benefits. It might only be a week. You can’t afford to lose your benefits because you don’t know.
Annie: Exactly. We eventually get to a situation where people are afraid to look to abled. They’re like, “I can’t see people have people seeing me.” Or like, “What if the wrong people see me having a really good day?”
Brianne: Yeah.
Annie: What would happen then? I get that with medical tests all the time. I have a problem. I’ll wait three months to see a specialist or more. And then I have to wait another three months for the tests that they order. And by that time I’m out of the flare, but three, four months later, I’m back in it. And I don’t have any tests that show anything because they’re only done in that one little window where everything’s alright.
Brianne: Yeah.
Annie: And yeah, it’s just… it kind of gets really frustrating after a while cause you’re like.
Brianne: Yeah.
Annie: Sometimes things have to be a bit more immediate, but they can’t be because of the way the systems work and, yeah.
Brianne: Yeah, yeah. And just because of the way that bodies work. It’s like, “What should I do? Should I go to the ER as soon as this is happening? Even if it’s not an emergency by itself, but I just need it documented?”
Annie: Yeah, exactly. Yeah. Bizarre. But then when I was in hospital, I had a tachycardic episode. Where I get… my heart rate just shoots up sometimes, and I have quite low blood pressure anyway, and no one knows why yet. And I had one of these episodes in hospital and I was like, “Oh, fuck. Thank God. I’m having it here, finally.” And people came in, they did an ECG and everything, and then they didn’t have paper for the ECG to print it. And by the time they found the paper, it was done. And then they took my glucose levels, like my blood sugar levels half an hour after putting up the glucose fluids. So the whole thing was completely backwards and yeah. And then that didn’t get documented property.
Brianne: Yeah
Annie: And you’re kind of like… you can’t win, like no matter what you can’t win with it. But. Yeah.
Brianne: Yeah, and especially when you need it. Like you say, when you need all this documentation for something else, so for your support, whatever that looks like, it’s like, “Oh my God, this is also work.” Just figuring it out, meeting the bureaucracy and stuff.
Annie: And the amount of paperwork that it takes to be disabled is absolutely massive. Like my son… I’m a full time carer for my son as well as everything going on for myself. We’ve got pretty much like… well, he’s not as severe as I am, but we’ve got very similar issues and yeah, the amount of paperwork I do between the two of us, the amount of admin and everything like that is just crazy.
Brianne: Yeah. Yeah, I bet. And another thing about all the paperwork is if your brain gets foggy, it is so hard to do that stuff right. And I’m sure it must, since I think everyone I talk to gets brain fog.
Annie: Yeah. Yeah, definitely. And you send it off, and then you go, “Oh, I didn’t write that down.” And then it comes back to bite you in the ass later because they go, “Well, why didn’t you write that down?” And you’re like, “Because I couldn’t remember on the day, because there’s too much to remember.” But we also have a really bad system here where if you don’t fill it out with the right… you have to hit keywords and also the more actual physical aids that you use, the more points you get. So if you use something specific to communicate, that would be more important than if someone has trouble talking but doesn’t use anything. That wouldn’t get the same amount of points, but it might be the same issue. And if someone walked with a limp versus if they walked with a walking stick. Those kinds of things. Those are really odd, but you have to hit certain keywords in the application forms here, and if you don’t hit them, you get denied straight away. And then you have to go through an appeal and tribunal and go to court with them and everything, which I had to do with my son. And you go like, “What’s the point?” Cause I won anyway, and they had to pay us all the money that they owed us for that time. So we got massive back payment of money that we needed back then, but didn’t need so much now. They didn’t get anything out of it. And we had massive amounts of stress put on us and everything. And it’s just the same outcome, right? Cause that just box-ticking all the time. And that’s a really weird, really weird process to go through but I see numerous people going through that every day on all the different support groups I’m in and everything like that. IEvery single day it’s someone else.
Brianne: Yeah. I feel like I see that a lot too, and the appeals too, like you say. It’s about that. It’s like “What do I do now?” As if the system, which it probably is, as if the system is designed to force people to drop out. They’re just waiting to see how many people won’t be able to appeal.
Annie: Yeah, absolutely. That’s what it is. We’ve got… cause there’s three stages here. There’s the initial application form, which massive amounts of them get denied. Then there’s mandatory reconsideration, which is where you phone up and then you go, “I don’t agree with it because of this. You need to review it.” And then that gets denied. I’ve never… I’m sure like 1% of them get through or something like that, but almost no one gets it turned over at that point. So that’s just another, hurdle that they’re going like, “Well, they’ll do the mandatory reconsideration, if that comes back negative a certain amount of people will drop out at that point.” And then you go to court, but going to court is… you have to produce reams of documents for them. Review reams of stuff that they’re giving you. And I’m sitting here with a master’s degree going, “This is why I’m capable of doing it.” But what about people who haven’t been able to get to that point because they have health issues or they just didn’t want to, or people who aren’t… I’m very literate because that’s always been my thing, but what if people aren’t on… what if they’re better at maths than English or whatever?
Brianne: Yeah. Or just have language barriers. There’s so many different ways that that can happen.
Annie: Yeah. And that also comes into the minorities and stuff like that. People who… English is their second language or all that kind of stuff is. Everyone in that group is at such a massive disadvantage, but those are the people that those benefits are there for, and yeah. It’s totally bizarre. Yeah.
Brianne: Yeah. The gatekeeping, just all of it. Everything about it is a mess, and I’m sure when you also are a parent… and being a parent when you’re chronically ill is so much, right?
Annie: I feel like I’m doing four or five full time jobs and being ill is one of them.
Brianne: Yeah, just keeping track of everything and trying everything. And so then I was also wondering, because you got the EDS diagnosis and then kind of at the same time as all of this digestion stuff is happening, which related, probably related, but on top of that or alongside that, is there any… what does EDS care look like for you? Because I know this is a tough one.
Annie: Yeah, so I’ve got… I finally hit a physio that knows what she’s doing, which is amazing because I had a physio before that was really, really questionable. And then another one that was kind of much lower level. So we’re looking good there, I’ve got physio exercises I have to do every day. And then I’m also supposed to be starting going to a local pool for hydro, once or twice a week. So that’s the physio side of it. I’ve got a massive amount… I’ve probably got a splint for every part of the body that I will wear if I dislocate something and I might need to brace my wrist cause I’ve pulled out of socket and it needs to rest for a day or two, then I’ll wear them for that. But I can’t… I try not to wear them all the time cause obviously then you lose muscle and then the joint gets worse. I have… obviously I’ve got all the feeds and everything that goes on with that. Then I’ve got medication every day to take and coordinate all of that. And then obviously with all of that, you’ve got to go back and forth to the doctor and the pharmacy and organize deliveries for the feeds… the amount of boxes I get every month, cause they deliver it monthly. All the feeding supplies and it’s a massive amount of stuff.
Brianne: Does it need to be refrigerated?
Annie: No, no.
Brianne: Okay. That, at least, would be easier cause…
Annie: Yeah, I would need another fridge.
Brianne: Yeah. Like when people have self-infusions and stuff that they have… or even just shakes sometimes that they have to refrigerate. You’re like, “That’s your whole fridge.”
Annie: Yeah. There’s lots of different kinds of formula, but there’s one that’s very standard here and they just supply all of the feeding tube stuff, the feeding tubes are made by them and everything. So it just all comes from one company, which is quite nice as well. But I have to coordinate all of that. I have… I think I’m under… between 10 and 13 different specialist departments, last time I counted, various different organ systems. And so there are weeks where I have one medical appointment every single week… every single day of the week, I get weekends off because that’s when the hospital doesn’t work. But yeah. Going back and forth… I didn’t drive at all, so that’s a big bus trip every time. And yeah, that in itself gets quite intense as well cause I think you have to build up to each appointment and you go like, “Am I going to remember what I want to say? What’s going to happen? How are they going to react? Are they going to dismiss me? Or further tests, and what are they going to be?” And all these kinds of questions going on in your head. And if you’re doing that every day of the week, then that’s quite intense.
Brianne: It’s a lot to keep track of.
Annie: Yeah, definitely. And then it’s just maintaining your body all the time. Every so often I have to put a joint back in place or I’ll be walking along and my hips not in, but I can’t get in, so I need to just deal with that or go home kind of thing. And all these kind of… you’re constantly asking… having to do little checks of “Head to toe, is my body okay?”
Brianne: Yeah.
Annie: And because the provenance fluctuate, sometimes it will be like, acid reflux is the biggest problem for me, or it’ll be hip pain, or all these different things and trying to deal with that. And then I also have really sporadic allergies. And so every so often there’s something new that I’m allergic to and I have to figure that out. So yeah, it’s just…
Brianne: It’s just all of the brain space that it takes, right?
Annie: Exactly. Yeah. And I think… I can sit here… I know that’s not all of it, but that’s the only thing I can remember the moment. And you go like “Every time you turn…” I keep saying these… like, every time you turn around something else goes wrong.
Brianne: Yeah.
Annie: You set something else down, and it’s sent something else flying and you kind of go like…
Brianne: Like, “What now?”
Annie: Yeah, exactly. Yeah.
Brianne: Yeah. And I think another thing… if without the larger context of a conversation like this, if somebody was just like, “Tell me about all the ways your illness affects your life.” That would be such a hard list to make cause you’re like, “I don’t know.” I bet… I don’t think about half of the stuff that I do every day to protect my body or care for my body that other people don’t think about.
Annie: Exactly. Yeah. It’s little things like rationing the amount of times you walk from the kitchen to the living room cause it hurts and stuff like that. It’s just ridiculous, isn’t it? All these kinds of things that you took… that I feel like I took for granted before I got so ill that like… you know, just not constantly being in severe pain and not being able to take any pain medication because all pain medication is contraindicated for something else. And yeah. The only thing I can take is paracetamol and in the hospital, they give it to me through IV, and it’s glorious cause actually does something.
Brianne: Yeah. Well when you have digestion problems, it’s a whole other level of like “Will this medication even enter my system?”
Annie: I know. No one actually knows what my medication is doing or not because I’m taking all of it orally.
Brianne: Yeah.
Annie: And it might be doing something. It might be doing a lot less than it should do, but the other thing that you get with EDS is that we… I don’t know if it’s like we metabolize it differently or something, but medications can react really differently in us. So there’s some, I need to take a massive dose of to have any effect, and there’s others that the tiniest little bit will send me flying. So yeah, you just don’t know.
Brianne: Yeah,
Annie: You never know.
Brianne: It’s impossible to say. And you mentioned support groups. Do you go to any real life support groups? I don’t know why I said real life. I mean in person… in person support groups versus do you spend much time online in support group stuff?
Annie: So I can’t go to any, real support groups because I can’t… they’re all in the evening and I’ve got a child that I can’t leave in the evening because he’s autistic. So it just doesn’t work, but I used to go to some for autism parents during the day cause they’re quite often while the kids are at school.
Brianne: Yeah that makes sense.
Annie: But again, it was kind of logistics, and when I started my master’s degree, I couldn’t do any of that anymore cause I had classes. Actually, the thing that knocked out completely was that every Friday morning I had a medical appointment for a while.
Brianne: Yeah, just something else.
Annie: And I couldn’t go and yeah, you just fall out of touch. But I have… I follow a few different support groups for different things. One of them is for EDS and the other ones are all to do with parenting on Facebook. And I find… the ones that to do with parenting are a little bit different because I work in a charity locally, so I’m there as a mum, but I’m also there as someone who is placed to give advice or network and stuff like that. So that’s a little bit different. I think it helps you get a little bit less emotionally involved as well because otherwise you can really take the weight on that everyone else is doing. And that’s… the EDS one, I don’t go on unless they’ve got a question now, because I would spend every day… I’d be scrolling through it going… and then I’d find problems that people are having and be going like “That’s exactly what Ive’ got going on.” And then I’d feel like had to go on this hunt to figure out what that was. But it just wasn’t healthy because it was dragging me down mentally because I’ve got enough to focus on without constantly being reminded of it every time I open my phone.
Brianne: Yeah.
Annie: And yeah, so I did… I think initially it was… there was this big thing cause the Instagram chronic illness community is obviously really huge as well, but also fraught with issues. And very early on I was very… I followed a lot of people on there and then also had the Facebook group. And I think a lot of it was kind of discovering the different things going on in my body and what was EDS and what was autism and what was just my body and separating all of that out. And it almost becomes part of your research thing because there is so little research done on EDS that you can’t just rely on an internet site. Because I think the official NHS one doesn’t even have much about it at all.
Brianne: Yeah.
Annie: Yeah. The general thing is just like “This is EDS. Not much is known about it. It can cause multiple problems.” And it’s like, “Okay, great.” But once that kind of initial need to research and find out and sort everything out ended, then it was just really emotionally heavy. And I think also… there was this big… this obviously these big…. almost social politics, things going on on Instagram. And some of it is very well-founded, but I think all of it is very unhealthy as well. And I’m very careful who I follow that I only follow people who are kind of there to boost each other up. That’s a big thing for me, but I’m a lot less involved in it than I used to be. And I did delete everything that I had up and reassessed how I kind of engage with that. And then the Facebook one, I really just only go on if I have a question. Because it’s just too difficult otherwise, you take on everyone else’s weight as well as your own.
Brianne: Yeah.
Annie: Yeah.
Brianne: Yeah, they can get…
Annie: You have to think about something else sometimes, don’t you?
Brianne: Yeah. Yeah, and I feel like, especially because I’ve now talked to more people about this kind of stuff… at the beginning, whenever the beginning is for everyone, at the beginning, you just want to know that you’re not alone. And so you go out looking for these groups and these accounts and you’re like, “Oh, thank God. Someone else who…” or like you say, you saw stuff and you’re like, “Oh, that’s what my body is doing.” And at the beginning that feels really affirming or validating. Yeah.
Annie: Yeah. Yeah, definitely. Especially when you… everything’s up in the air medically, like I didn’t have a diagnosis yet, but I was very, very lucky. You see… there’s literally a campaign going to like how many years it takes people to get an EDS diagnosis. And from the minute I went to get that referral for the rheumatologist to the minute I had a physical diagnosis in my hand, it was a year and three months, which is insanely low. Yeah. Admittedly, that was after I had technically had EDS for 26 years, but the actual medical thing was super fast. Whereas I know people who went to the same hospital I go to who had to fight years to even be assessed. And people who went to that hospital and never got assessed and never got a diagnosis, and you’re kind of like… I think I just struck gold, but it was also another one of these things where I knew what keywords to hit and what to ask and what to insist on and what I could and couldn’t because I’ve been in the medical system since I was eight with autism. So, yeah. That was it’s own thing. But I think the way you identify with illness and becoming ill… first, you have to find a way to incorporate it into your identity because you don’t have a choice because it’s such a massive part of your life, you know? And that’s a really big deal. I actually… my masters thesis was about how people incorporate a diagnosis of autism into their identity. And how language affects that. So that’s something I’m really, really interested in, but I found… I find like that’s why you kind of dive into the chronic illness community at first because you have to surround yourself in it to figure out where you are in it and where you are in your body, and how you feel about it all. And you look at all these different people’s perspectives on their illness and go like, “Which one do I identify with? What’s useful to me?”
Brianne: Yeah.
Annie: And when that initial phase wears off, you start looking at a little bit more big picture type thing, and look at the community a little bit more critically. And then I think some people don’t do that, and that’s fine. And some people do need it, and that’s okay as well. But I think everyone has to find their own basis with it, I think.
Brianne: Yeah.
Annie: But the whole identity thing for me was really weird because I went through an autism diagnosis when I was 14, obviously. And that process was so different to the EDS process and being diagnosed with those two things felt so different because I waited six years to be assessed for autism. And the only reason I got it after six years was because my parents went private. And then I got the diagnosis on the day.
Brianne: Wow.
Annie: Everyone went home and the only reason that happened was because my mom was studying psychology at the time, read in a book about autism and went, “Hang on.” And this was something that we found buried in my notes. Years before, I met a psychiatry student, I think she was, said that I should be assessed and that there were kind of social issues that should be looked at in more detail. And that was when I was eight. And they didn’t do anything.
Brianne: Nobody followed up on that until… wow.
Annie: Exactly. And so when I was 14 and I got it, and we’d kind of been going through so much and I was dropped out of school by that point and everything. It was… yeah, that was just a massive relief. And it was like, “Okay, here’s what it is. This is what’s been going on and you are not different. You are just autistic. And that’s okay.” And my parents also framed it really well and my mom kind of taught me about it and bought me books about it cause I’m a reader and that’s how I understand life. And it was, I think for our whole family, it was a bit of a relief. So it was incorporated into our family really well, which also might have been affected by going private because of the type of language and treatment that you get when you go private. I was diagnosed on a really sunny day in these lovely rooms that were in converted horse stables in the countryside, and it’s quite different to your kind of gray NHS waiting room type situation. Whereas with the EDS, it was an uncovering of everything that was wrong and really a process of discovery of every suffering that I was going through, and every day or every few weeks I would wake up and another part of my body had fallen apart. And so it was a big sense of loss. I think I’ve been through the grief cycle quite a few times over the past year and a half. And that’s so, so different. But it also changes the way you’re kind of identified with your illness and you have to incorporate it into your identity. But how do you do that? When it’s associated with loss rather than relief.
Brianne: Yeah. Yeah.
Annie: That’s quite a big deal, yeah.
Brianne: Yeah. And how do you make sense of it if you feel both in some ways? Cause I think for some people… and I think for me, yeah, I’d say for me, it was like when things kind of stopped working with my body, there’s so much second guessing of, “Is this in my head? Am I just… is this just a mental health problem that I’m treating like it’s physical? Or am I exaggerating? Or am I lazy? Or am I all of these things?” And so there is some relief when you’re like, “No, it’s not. And also. My life is going to be… I need to live my life really differently.” Both things are happening at the same time, and that’s really hard to make sense of, or it was for me.
Annie: Yeah, definitely. And I think, it’s also kind of this… yeah, it’s really weird kind of feeling of having permission to say, “This isn’t in my head.” I’ve been very lucky to have had very few encounters with doctors who dismissed me, which is incredibly lucky and I’m aware of that, very grateful of it. But it also has given me… just even having the diagnosis on paper… and I… the day I received that, I looked at it and I cried, a lot, just out of loss. Cause I think up until that moment you go on, “Maybe there’s something.” Even though you know there isn’t, there’s this thing in the back of your head that goes, “ell, maybe they’ll find something and there will be a pill I can take or genetic treatment or something that will make this resolve.”
Brianne: Totally.
Annie: And even though you know that’s not true, there’s still this tiny spark in the back of your head. And then when I got that paper, it was this kind of loss of that spark. But equally, it was the relief of having a piece of paper I could go to people with and go, “This is happening. This is real. There is a name for it. I’m not just being difficult or lazy.” And all those kinds of things people get labeled with, and also, what is difficult or lazy? You know? I’m sure there are people who genuinely are, but I think those words are given out way too freely. People might not be lazy, they might just be tired one day and stuff like that. And permission isn’t given to people to be difficult or lazy or different or all those kinds of things. Because it doesn’t fit in with the machine of life go, and you’re allowed to have a day where you just don’t want to get off the couch, and that’s okay. That might be really healthy.
Brianne: Yeah.
Annie: It’s pretty weird. Yeah.
Brianne: Yeah. It’s like that thing about how… well, I guess the kind of welfare queen stereotype, this idea that there are so many people out there who are just happily doing nothing for no reason. It’s like I don’t… I don’t think that’s a thing.
Annie: With how difficult it is to get welfare benefits. Do you really think that the majority of people on them are on them for their own benefit and their own gain. I know there are people like that out there, but they’re probably 1% of all the people that actually need it.
Brianne: Yeah. So small and honestly, having now had periods of my life where I spent months at a time only moving between my couch and my bed. And only watching television, mostly with my eyes closed. It’s boring. When I was working, no part of me was like, “Man, I bet my life would be better if I could just lie silently and unmoving on the couch while somebody helps me get to the bathroom.” Laziness isn’t the same as rest.
Annie: Yeah, exactly. And I think it’s also this kind of… because people want to be able to do that for a week. They want to be able to just sit down for a week because they’re not allowed to.
Brianne: Yeah.
Annie: But that’s what they look at that… that’s the lens that they look at that through, and that’s kind of a societal thing as well, isn’t it? And then they kind of don’t realize that after that week, they’d really massively want to get back up again and go back to work, you know?
Brianne: It’s also a capitalism problem.
Annie: Yeah, exactly. They don’t take a second to think about the lens that they look at that through, but I think it’s also… I work way harder now than I did when I was healthy. I might not be doing a full time job, but I am exhausted from the minute I get up to the minute I go to bed. And sometimes I’m just crying cause I’m so tired. And it’s… kind of on a cellular level, a full time job just to hold my body together, and people don’t get that at all. They don’t understand that you’re not just sitting there lazing around and pampering yourself and stuff like that. Even going to the toilet takes planning sometimes because you’re in so much pain, you don’t want to stand up.
Brianne: Yeah, yeah. Or if you’re tachycardic or whatever. I definitely… on like POTS-y nap days, it’ll be like, “Okay, how much longer can I wait until the torture of standing up like…” It really does come down to that. Yeah.
Annie: Exactly. Yeah. One thing that I’ve noticed and thought about so much over the last year is how everywhere that you go, you have to stand up to queue. You can’t… the only place you don’t have to do that here is when you’re waiting for your medication. And literally one day I was standing in line, I had crutches at that time, and I was standing in line and a guy went “Go sit over there, and I’ll make sure that you go before me.” And it was just that permission to go and sit down rather than have to stand in line was just… I’ll never forget how grateful I was for that. And it’s just stuff like that that’s really ableist but it’s so incorporated into society like… what about the people that can’t stand up to queue? It’s really odd to go to someone in line and go, “Can you just hold my place because I can’t stand up?”
Brianne: Yeah.
Annie: That’s a really weird thing to do.
Brianne: Yeah.
Annie: So it would take a lot of social courage to actually do that. And I’m sure there’s a lot of people that just go, “You know what? I can’t cope with doing that every day.” Because every time you do that, it takes you down a peg.
Brianne: Yeah.
Annie: There’s so many things that are just ever so slightly humiliating about it.
Brianne: Yeah. And like even just the kind of unpredictable nature of it… so for me, lately, I have been exercising, which is pretty cool. And I go and I use a recumbent bike. So, standing up and exercising is not on the table, but my body has been in a place lately where I can some days use the recumbent bike and actually exercise. And that’s very cool.
Annie: Yeah.
Brianne: And one day I went from the gym to the dollar store next door to buy something and my… sitting had been fine, but my POTS was so bad that I couldn’t stand in the line, to your point, that’s what made me think of it, but I was the dollar store, it’s not like there was anywhere to sit anywhere. And so I just crashed on the floor cause I didn’t know what else to do. So I was shuffling along on my spot in line. But I just… I was going to black out if I had stayed standing. And I was just like “This is a ridiculous situation.” And I’m wearing my gym clothes. I literally did come to the gym next door. I present as a healthy person for all of those reasons. I’m not… I don’t even know how to start the conversation of like, “Hey, I know that I’m kinda sweaty from exercise and I seem like I’m probably fine, but actually standing is killing me. Please…” I don’t know how this could be made easier. It’s not even… the systems aren’t there like you’re saying.
Annie: It should just be normalized to have chairs dotted around, like in supermarkets. It’s massive job to get all the way round a supermarket. That’s really long. And there’s nowhere to sit. The first time that that came to be a problem for me was actually years and years ago when I was breastfeeding my son. And you get halfway around the supermarket with a baby on your own, and this is an achievement unto itself. And then your child needs feeding. And he was too big at that point for me to stand up feeding him, and breastfeeding’s much more normalized than in a lot of places in the States, so it’s not necessarily something that you are like… I got more people complimenting me on it than I got people giving me weird looks for instance, but in the supermarket, what on earth are you supposed to do? I sat down in an aisle. I breastfed him until he was ready, and then got up and carried on my shopping. I couldn’t abandon my shopping at that point because I’d been doing it for like 45 minutes or half an hour, however long it takes with a baby.
Brianne: Where are you going to put your cart?
Annie: Yeah, exactly. And it’s like… just put a chair. Every few aisles put a few chairs down.
Brianne: Or on the cart. Make the cart so you can sit. I just sat on the cart at home Depot last week, which was like a warehouse store for construction and stuff. And it was one of the big ones that’s for putting wood on, cause my husband was building stuff and I was just like, “I’ll just be sitting here almost on the ground on this cart because I’m not standing, that’s for sure.”
Annie: Yeah, yeah. Completely. And yeah, it’s weird how these situations crop up, but it makes you look at the world around you and realize like… why is it that there’s only braille on the stop button on a bus? Nowhere else. Why is that the most important place to have braille? Yeah. But you don’t have in shops, you don’t have it on signs to direct you into town or anywhere except for the stop button on the bus.
Brianne: Yeah. How did this one… it’s great that it exists there, and how did it happen that this is the only thing?
Annie: Exactly. Yeah. And I think being ill and being disabled makes you look at things in a really different way. And it’s weird for me as well cause I’ve been in every situation because I’ve obviously been able-bodied, I’ve got kind of developmental disability, but now I’m also really ill, but I’ve also been the person doing hydro for kids with disabilities, and then three years down the line, someone’s doing hydro for me.
Brianne: Yeah.
Annie: And that’s really weird. That kind of gives you an appreciation of all the different issues that people kind of walk into. You know?
Brianne: Yeah. And how much harder it is to anticipate. Because braille is a great example, and ramps are a great example. That ramps are helpful, and can be helpful to so many different people. It’s not just wheelchair users, it’s anyone who has trouble with steps, but people with strollers, whatever, whatever. But you’re like, “Okay, they’ve got ramps everywhere.” But if there’s no chairs, all of the people who are ambulatory who can’t stand all the time… just all of this different stuff.
Annie: And the width of aisles as well. People don’t understand how much room you need width-wise to use crutches because they don’t go straight down. They go out slightly to the side and then you use that, and you go, “Oh, I can’t fit in here, so there’s no way a wheelchair can.” And that kind of thing. But we also have a massive problem in the UK where a massive amount of the architecture around is Victorian. Because that was the time of the most productivity. And so there’s old concrete steps everywhere. There’s couple of… some streets are still cobbled and all that kind of thing, and you go like, “There’s a time to preserve it, but there’s also things that need to be done.”
Brianne: Yeah. Like, “Yes, it’s charming, but is that enough?”
Annie: Yeah, exactly.
Brianne: Yeah. Where I live in the States, I live in Massachusetts, and they’re obsessed with their colonial history. So my town, it’s from the 1800s, and it’s like if you’ve ever seen the show Gilmore Girls, it feels a lot like the town of Stars Hollow.
Annie: Yeah.
Brianne: It’s very charming, and I think most of the downtown blocks were built in the 1800s, so same era. And there’s steps to almost every store, all of this stuff. And you’re like, “Oh, it’s…” 1.) There’s going to be a whole bunch of NIMBYs who are like, “Oh no, it’s charming. We can’t fix this problem.” Plus there isn’t really money to do it, and so people are going to have to find it, I hope, at some point. There’s so many layers to fixing this stuff of changing minds and then actually figuring out how to do it logistically.
Annie: Yeah, even just with a new build, like you build a new shop, but the doorways aren’t wide enough. Like how does that happen, that it gets cleared? To the point that like a wheelchair doesn’t fit in the front door of a shop. Who cleared that?
Brianne: Yeah, we should know better than that.
Annie: Yeah, exactly. And yeah, it’s really bizarre, but that was one of the things I was nervous about with starting uni, because I went to… the uni I go to is the perfect uni for me. My supervisor for my PhD is exactly on the same page. He’s really, really good and everything, and so I didn’t feel like I could turn it down, but it’s in the most inaccessible place ever. There’s very much the kind of problems that you’re talking about. I think the place was built… the town, which is actually the nearest town to where I grew up, cause I grew up in a little village, is built in Roman times, and so it’s a nightmare. I’m sure most of it is listed, so can’t be changed. The actual uni is amazing. I’ve gotten to know very well where all the lifts are cause it’s built on a really steep hill, so everything’s layered. But I was going there, and I had to walk up a massive hill to get to the uni from the bus stop cause I can’t drive cause I’m autistic. And that’s one of the things that my autism stops me doing. I know a lot of people with autism can, but I’ve spacial awareness issues.
Brianne: Yeah, just not for you.
Annie: Yeah, exactly. And say there was this hallelujah moment when my disabled student adviser told me that she could get funding for me to get a taxi there. And I literally… I got funding to get taxi there and back, but all I do is I get a taxi there and then I didn’t have to walk up that massive hill, but I can walk down into town and go get coffee before I get the bus home. And it’s this bizarre thing, but it’s literally just… I was like, “I could get a taxi from the bottom of that Hill to the top and I’d be perfectly happy.”
Brianne: Right. The bus wasn’t the problem, but the location of the bus stop was not working.
Annie: But yeah, it’s just these kind of like… it’s these crazy situations that you never anticipate until you’re ill, and then when you’re ill you hit like 50 of them every day and you’re like…
Brianne: Or like, hills that you don’t notice. I feel like even that.
Annie: Yeah, like the gradual inclines that become hills to you.
Brianne: Yeah. Cause I got really sick… I was living in San Francisco when I got my sickest and that is a notoriously hilly city, but I lived pretty close to the beach, so it gets flatter out there, but it was the same. It was like, “Oh, my street is much steeper than I thought it was when I first moved here, and had no issue walking compared to…” I got to a point where sometimes I’d text my husband to be like, “Can you meet me at the bus stop?” Which was literally a block and a half away, and small residential blocks. But it’s just like “I need someone to kind of nudge me so that I can walk home.” That’s where I’m at right now.
Annie: Yeah. Yeah. It’s crazy, isn’t it? Like the kind of tiny little things… for me, stairs are a big thing and I’m aware that I need to not stop going up and down stairs cause then I’ll lose those particular muscles that you exercise when you do that. But equally, I don’t want to go up and down stairs too much every day. And I would have this… it’s almost become a game at this point of how much stuff can I carry downstairs so that I don’t have to go back up again for a few hours… kind of anticipating like, “What am I gonna need for the next two or three hours?”
Brianne: Yeah.
Annie: Really bizarre things like that, isn’t it?
Brianne: Yeah. Just like, “What will I not have today? Because it’s somewhere that I’m not going back to.”
Annie: Yeah, completely.
Brianne: Oof. So I think we’ve covered a whole lot of things. Is there anything that’s on your mind about chronic illness or health or any of these things that we haven’t gotten to for some reason?
Annie: I think the only other thing that I find already odd about it is the kind of infantilizing of it, like the way it makes you… in a lot of ways it makes you like a child but in a lot of other ways, you’re standing there going, “I’m not a child, but people are treating me like one.” One of the weirdest things for me with that recently, which shouldn’t even be weird to me, is that I’ve always been able to buy clothes from the children’s section because I’m really short, but now I’m not the biggest size in the children’s section. I’m the age 12 size, and that’s really bizarre. I don’t know why, but in my head that’s a massive thing. But also being in hospital and how dependent you become on people and the stuff that you let people do to your body because it’s medical, but actually, really the last time you had that kind of care done or that kind of the last time someone saw you in that position or whatever was probably when you were a toddler. Yeah, really, really weird. But also having been working with children with really complex disabilities. And some of them… people would talk to them like they were two, and they were actually like… had a developmental age of like 10 to 15 year old. But then other ones, because they were ambulant they get talked to like they were completely typical when they might have had the mental age of a two year old. And this disparity between it all is, yeah. Really bizarre. Yeah.
Brianne: Yeah, yeah. And how… yeah, bias just plays into that. And even when you’re talking about hospital, I’m just thinking of some experiences that I’ve had recently where… how does consent work in medical care? Which… really small stuff. So I just had a neurology appointment, and I just had an EMG done… where they poke you with the needle to see how your nerves are, I guess, and the kind of thing where like…
Annie: I had that yesterday.
Brianne: Yeah, I had that yesterday. That’s fun. But some people are really good about telling you exactly what they’re going to do and where they’re going to touch you. And some people are not good at that. And I personally would say that for me in those experiences, I was not bothered. The way that I am and my body is, and my experience of this doctor is such that I don’t mind that he just basically reached up my gown to find my hipbone without telling me that that’s what he was doing. But I’m also very aware that this seems normal in medicine, and it shouldn’t be because it’s not trauma-informed care. There are a lot of people who this would not be okay for, and it doesn’t say anything… I’m not bragging. It doesn’t say anything about me that I happened not to be bothered. It says something about him that this is so normalized that it didn’t even occur to him and that’s messed up.
Annie: Yeah, but then you also find that maybe a year and a half ago, I would have found things like that really strange. But now I’m just like, “Yeah.” You become totally desensitized to it. It’s very difficult to retain ownership of your body because so many other people have a say in it or have power over it in a lot of ways, and it doesn’t need to be that they’re abusing that power it’s just the fact that they have it. The fact that someone approaches you in a hospital while you’re inpatient, and you just hold out your arm because you know that they want to measure your blood pressure cause it’s obvious, but it’s not even spoken about anymore. It’s just like, “Yep, go, go on.” One of the big problems that me and my friends have… so I was inpatient in March and really massively coincidentally, was inpatient with two girls with really similar issues who both also have feeding tubes. And normally… last year I was inpatient. I was with loads of elderly people who were really dehydrated and a massively diabetic girl. So you don’t normally get that situation. But we all universally had this issue that I didn’t realize everyone else had as well, where they won’t let you not eat. Because you’re vomiting all the time, they don’t trust you on it. So they come round with the food or they come around to like get you to order your food, and when you say, “Oh, I don’t want anything.” They won’t accept that. So you have to order something, and then when you get it they’re very reluctant to let you not eat it and you’re like, “I’m literally in hospital because I can’t keep food down. I’ve got a feeding tube. I’m trying not to run it up. So can you just leave me alone?” There’s no trust with you with like accepting that you have that autonomy to go like, “Okay, I can tolerate food right now,” or “I can’t.” There’s no respect involved in that.
Brianne: Yeah.
Annie: And last time I was inpatient, one of the girls I said to her like, “Oh, I can’t eat. I won’t order anything.” And she was like, “Okay.” Went off then to speak to the nurse, came back and went, “The nure says you can eat if you want to.” And I was like, “That’s such a loaded statement, isn’t it?” Cause it’s like, “if you want to.” Well, I’m in hospital because I can’t eat, do you think I really don’t want to eat? And it’s kind of a kick in the teeth at that point. But we all end up on nil by mouth because they put us on nil by mouth before a procedure, and then never took it off again… off of our notes, which is terrible because we should have been given water and stuff, but it meant that we didn’t have to have that argument again for the next four days. So I was like…
Brianne: Yeah, it’s a trade off. Yeah.
Annie: Yeah. But really bizarre. Like.
Brianne: Yeah. The trust stuff is huge.
Annie: Yeah. You get reduced to something, don’t you? People don’t realize that you still know your body best, but you also know everything that’s wrong with your body the best. Although you might rely on the doctors for the procedures and the tests to diagnose the actual underlying issue, if you’re having massive tachycardic problems one day, and you’re just exhausted and need to lie down, people should trust you on that. They don’t at all. Yeah, yeah.
Brianne: Yes. That is a huge thing. Yeah. I don’t even… I don’t even have anything to add to it except just vehemently agreeing that it’s a huge problem that within the medical system, we do not get to be the number one representatives of our own bodies almost or interpreters of our own experience. Yeah.
Annie: Exactly. Then you are also having to trust lots of other people with your body, regardless of whether they trust you or not because you need them to help you or prescribe medication or, also not prescribe medication if they know it’s not going to help you and things like that. And all of that is very loaded as well, isn’t it? And it’s all this trust that’s bouncing back and forth between lots of different people. And then alongside that, you’ve got this bizarre game of Chinese whispers that’s constantly being played between nurses and healthcare assistants and doctors and superior consultants and all of that kind of thing. And you’re like… there must be between 30 and 40 people involved in my care between… and that’s just the core people, between the secretaries I have to talk to and the dietetics team and all the consultants I see and then my primary care doctors and stuff. That’s a lot of people to all be trying to do one thing.
Brianne: Yeah, to have a shared goal.
Annie: Yeah. Exactly. Yeah.
Brianne: Yeah, yeah. Medicine. It’s a thing where…
Annie: You don’t realize what it is until you become a patient, do you? Like, “Oh!”
Brianne: “Oh, that’s much more complicated than I realized.” Or like, “There’s a lot more moving pieces than I thought.” Yeah.
Annie: Yeah a lot more politics as well, isn’t there? And you get to know the politics between different people working in the hospital as well, and what people you don’t want to get between and what people you do and stuff like that. Yeah. Really, really weird that you kind of get… there’s a massive kind of social community. It’s like a society going on that you have to kind of infiltrate, and then you find yourself in the middle of it, and you’re like, “Oh, nevermind.”
Brianne: And like earn how to communicate with.
Annie: Yeah, exactly. You need to learn like what to say and what not and stuff like that, don’t you? Yeah.
Brianne: Yeah. It’s like a code switch. Yes. Okay. Okay. Yeah. Well, thank you so much for taking lots of time to talk to me.
Annie: Oh yeah. Thank you for being so understanding as well.
Brianne: Yeah, no, I totally understand. I mean, especially for parents and stuff, but with chronic illness, I know everybody is taking… giving me a huge amount of energy and there’s… I don’t expect it to be perfect because that would be ridiculous. And this isn’t a business podcast where everybody’s trying to, I dunno, have no background noise so that they can sell their products or whatever.
Annie: Yeah.
Brianne: So that is great.
[guitar riff]
Thank you for listening to episode 41 of No End In Sight!
You can find Annie on instagram @keepingstars 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 post each episode as a story but haven’t posted to the main feed in a while because I’m so behind on transcripts. But of course, that’s the whole reason i’ve started a patreon account! Which I’ll go ahead and plug again: it’s patreon.com/noendinsight.
Next week I’ll be talking to a nurse who now lives with severe 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.
And finally:
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 love to cross stitch as a way to feel productive during flares when I’m stranded in front of the television. I’ve got a few fall patterns in the shop that are about to be seasonal, so I’d love it if you checked us out at digitalartisanal.com.