Hello, welcome to another episode of Unpacking Neuroqueerness.
This is your host George Mooneys Gund.
Today I have my friend X back on the podcast for regular listeners you may remember X.
We are going to talk today about X's experiences with Ehlers-Danlos syndrome.
I'm just gonna ask her a little bit about what it is, how she experiences it, and the correlation to the ADHD experience.
So, yes, welcome X.
It's nice to be back. It's always nice to talk to you.
Ehlers-Danlos syndrome can be shortened to EDS.
The overview is it's a group of 13 individual genetic conditions.
So there's different subtypes, but all of the different conditions affect the body's connective tissues.
Connective tissue is made of cells and fibers and what it does is it protects and gives structure to the other tissues and organs in the body.
So this is the little biology run through. It stores fat.
It helps move nutrients and other substances between tissues and organs.
It helps repair damaged tissue and it's also made up mostly of collagen.
That's the stuff that people like putting on their skin. It's the thing most people when they get older they start producing less of.
It's why you get more wrinkles. One of the reasons.
My type of Ehlers-Danlos is hypermobile EDS.
I have more collagen than I probably should.
That affects my connective tissues like my joints and essentially the entire rest of my body which is not a helpful way of putting it.
You have to think about it like this. Collagen makes up your bones, your hair, your muscles, your tendons and everything.
So that means that it affects your vascular system. Your heart is made up of collagen.
For some people with vascular Ehlers-Danlos that means that their heart could over expand and they could have a heart attack or could pop for no reason.
I don't seem to have that one. People think it's just a being stretchy thing. It is.
But when everything that makes you up is also stretchy.
So not just your skin or your hair or your nails but also the things that line your nerves, joints, your tendons.
Your body doesn't have the ability to stop things from pushing farther than they should.
I see.
Which, and that's the problem. So on the one hand I am super flexible, I've always been that way.
I can do splits, touch my toes, put feet over my head, all of it.
Which is a fun trick to have.
Yeah.
I have objectively fairly soft, young looking skin because I produce so much collagen.
Unfortunately that also comes with things like being easily bruised.
For example my parents used to have to tell people when I was a kid that I wasn't being abused.
I was just bumping into things because I would get such serious bruises from such small things.
Yeah.
That it looked like someone was beating my legs up.
Yeah.
I still get comments about it. Like are you okay? I'm fine. I bumped into the desk earlier.
Now there's this huge bruise on the side of my leg that I didn't even see at the time.
So you don't necessarily experience the pain like when you hit the desk.
I'll feel a normal amount of it. I also have a high pain tolerance which is also something that's quite common for people with other stone lows.
But there's things that considering how big the bruise is or how deep the color is,
I did not feel enough pain for it to look like that.
So I'll bump into something and then my entire foot is swollen up and I'll be like that was literally just a door.
Yeah.
Right here.
Okay.
Yeah.
Being a detective, going through your own bruises, I got that from that day and the angle of this one comes from the cupboard because I didn't close it.
You're just sort of like what is that mark where did it come from?
For me specifically what I have trouble with because of the hypermobility,
I sometimes wake up with dislocated shoulders or joints I have to pop back in which is not great.
It's incredibly painful.
Or you get subluxations which are like partial dislocations.
So something will just move slightly out of place and you won't know why you feel weird.
And so something pops back in and you're like, oh, that was a quite knit socket.
Okay.
But these are things I thought growing up were normal.
Obviously they're not.
I thought everyone just walked around feeling occasionally sort of weird and wobbly for no reason out of nowhere.
Turns out no, no people don't.
I'm getting more information about it.
However, because I was a dancer, it was mostly overlooked to the gosh is a dancer's flexible.
But then other dancers would call me a rubber band girls,
which is probably a sign that it was weirder than usual.
There's a lot of other conditions that can happen with it.
But mine specifically, it's difficult because you don't know whether you're sick or whether you're just tired,
whether you know you're having a nervous system flare up.
It's really difficult to figure out what to do about it because sometimes you have no idea and that's the worst bit.
I see.
Yeah.
Just not knowing exactly what's going on.
Well, it's a bit like if you were having an autistic meltdown, but you didn't know what that was.
Yeah, exactly.
Yeah, definitely most of my meltdowns until even recently because even after I had a diagnosis,
I didn't know and told me that my meltdowns were associated with that.
Yeah, it was one of the things I had to figure out way later.
Like I think meltdowns, the correlation in between meltdowns and autism,
I didn't really find out about until maybe a couple years ago.
No one told me anything about stimming or about meltdowns.
I think I got very limited information about eye contact, but I did not.
No one told me about why I didn't like eye contact.
No one told me about...
Which is very important.
No one told me about sensory overload.
I always assumed that what I was experiencing were panic attacks or was like a dopamine issue
or was more ADHD related or depression or anxiety related.
And what was frustrating about that is that I had done, say, CBT and other kinds of behavioral therapy,
which was supposed to work and I knew how to do it.
And sometimes it would, but because it wasn't really in my head,
I couldn't overcome it by doing another thing, really.
It felt incredibly frustrating and disheartening because I was doing all the right things.
I was eating all the right things. I was doing all the right things.
And it did help with my ADHD.
It helped regulate my nervous system a little bit,
but it didn't explain why once in a while I physically felt like...
I wasn't going to faint, but I was sort of just...
I didn't feel like everything was okay.
There's not a great language to describe it, even in medical articles.
They ask people who have Ehlers-Donald's flare-ups,
which is when there's symptoms like you start turning red and then get really cold.
You start feeling a bit dizzy. You have trouble breathing.
It's not terrible, but it's your entire adrenaline and nervous system just going haywire.
If you treat it like a panic attack, that's not the worst thing in the world,
but you can't outthink it.
So you're just sort of in the middle of doing whatever and then something flares up.
And then you're like, oh, I guess I have to just sit under a weighted blanket until this is over.
Which in turn causes anxiety because you might be ready to do whatever it is you want it to do,
but once in a while you're afraid it's just going to happen to me again.
So it can happen unpredictably.
Yeah, that's why I used to think there were panic attacks.
Because I'd be perfectly fine and then out of nowhere I would have this physical weirdness happen.
Like, well, I'm not anxious more than usual. It's not something that's been growing.
It's not an anxiety attack. This feels like a very physical panic attack.
When was it that you started realizing that it was different,
that not everyone was experiencing this, that you were experiencing?
I had kind of an idea when I was a kid because I would twist my ankle a lot when I was stressed out
because of the joint flexibility, like my ankle would roll.
It would almost always happen when I was nervous or it was a social gathering or I wasn't paying attention.
At the time, my parents had someone who was working with my brother concurrently
to help him learn skills to deal with autism.
I essentially told my parents that I was doing it for attention and that's quite common for the siblings of autistic children to do that.
I think I almost started gaslighting myself.
Because my attention span was so short, I would get distracted and I'd even forget about the pain,
which was really bad and then I'd run off and then be like,
oh, so she can run but then I'd be in bed for the next two hours.
So it was just very... it didn't make sense.
And I had this sense when I was maybe six that I just...
I feel like I'm not getting the right reaction when I say that this hurts or that hurts.
I don't feel like the adults around me are taking me seriously, so maybe I'm just making it up.
Even though it's different, that's something I can relate to in terms of things like executive functioning,
the neurodivergent experience also of sensory overload and executive functioning and being told like,
oh, you're overreacting or...
Yeah, I can certainly relate to that feeling of people not understanding what's going on with me because they don't see it.
Yeah, neurodivergent symptoms and executive functioning difficulties and sensory overload and other stonous or joint disorders.
Because they're internal, for the most part, it's so dependent on context and health factors and whether you've had enough sleep
and what's going on around you because it's not consistent.
So when people try to look for something to make sense of it or find a pattern and they don't,
they just assume that there's no reason for it.
Yeah, no, that's true. I can relate to that with sensory overload.
Also, the variability of it and that's something I didn't even really understand until relatively recently how dynamic it is.
Because then I figured out that depending on sleep and everything, some days I'm super sensitive,
so some days the sound of the person chewing next to me is going to bother me.
Then some days I can go to a basketball game and there's all this different noise.
And I'm fine. But I think that's also partly because different days are different for me with the sensitivity,
but it's also the kind of sound and if it's a predictable sound, when I go to basketball games, I know what kind of sounds to expect.
There's a crowd. There will be lots of voices.
You're not going to walk in and it's going to be a funeral parlor. You can prepare yourself for that thing.
Yeah. And then with some things, it's just not as predictable.
And I didn't plan for it necessarily. It's hard to explain still sometimes, but I know you can...
I completely understand. It's the variability and to connect it back to the others' knowledge that's part of it.
There's times where there's activities I've done my entire life and I'm completely fine.
And then depending sometimes it's even about how hot it is outside.
Difficulty temperature, regulating temperature is one of the symptoms.
When it gets hot or I take long hot showers, I get all red and blotchy and weird and I start feeling dizzy.
It has to do with my circulation system.
The actual veins also expand and contract at inappropriate times because I have flexible walls.
So sometimes I have purple feet because no blood is going there and then all of a sudden my feet are bright red.
Wow.
It depends usually on how I've been sitting for too long or standing for too long or in one position for too long.
It has orthostatic problems. It's your body having trouble regulating the amount of blood and circulation and how it gets to things.
Things like that. If I sleep better, of course my body is probably going to regulate itself better.
If I regulate my nervous system, if I do yoga, if I do certain kinds of exercise, also very good.
Which for the ADHD and for that.
I see.
But for example, I was a dancer and I used to run for years.
I was told to stop doing that a few years ago because my knee was moving a lot earlier.
I had to suck it because the joint was becoming too flexible.
The weight wasn't falling where it should have on my feet.
So I couldn't even run properly.
It's not something you can control.
You have to focus to be like, I have to put my weight on this part of my foot so that my knee doesn't do this other thing.
Whereas most people just run.
So it's also learning that I can't do that anymore.
I can cycle, I can do other things, but there's stuff that I'm learning as I grow older that I'm going to need to adjust how I live or how I do them.
Or I just can't do them.
Yeah.
Which is a bit scary because some of them, like the running, was a way of coping with other stuff.
So when that was taken away, I had to figure something out.
Yeah.
Because I know as a neurodivergent person, when you get really into something and that's what you do that soothes you, can't have it anymore.
And basically, it can happen.
It can be even a beverage at a certain place that you like, that you're used to ordering.
I've had that happen with certain snacks and stuff or chips or whatever. I would buy something and they change the ingredients or whatever.
There's something different about it.
And they come on the fact that they think that a lot of people won't notice and maybe that's true.
But I certainly notice and I'm sure there are a lot of other people that notice too.
The things that connect these kinds of, anything about regulating your body or trying to help it do what it should be doing naturally.
Or it's doing it in a different way. Dopamine is working in a different way. Your joints are working in a different way.
Brain's differently wired.
The advice that people give you for it, when they do give you advice, is often unhelpful.
Yeah.
Or actually harmful. I've been told to do things by physical therapists that actually made things worse.
I was just thinking, because you mentioned CBT briefly earlier.
So the difference in between CBT and DBT from what I understand is that CBT is more about changing thoughts.
And DBT is more about feeling the thoughts and identifying the feelings and writing through them.
That's how my therapist explained it to me.
And I've found that as an autistic person that DBT has worked, CBT was hard for me because the thoughts feel very concrete and literal.
And I know the thought is what it is.
Then I came to read about, apparently, that CBT is not working well for autistic people.
Because even my sister deviates towards CBT a lot of times when she talks to me.
Because she's like, I'll be in a stressful situation where there's maybe some kind of sensory or emotional overload going on.
And it's probably something that she's not able to fully understand.
And she'll just tell me to relax or whatever or to just stop and relax and sometimes this could also be with ADHD.
If I'm worried about something, I can't just stop and relax.
And it's more helpful for me to identify the feeling and write through it.
Because I know brother is autistic.
Has he expressed to you if he prefers CBT or DBT and do you feel a preference as an ADHD or for CBT or DBT?
Alex and I have talked about something that you touched upon which is that cognitive behavioral therapy is helpful as long as it's trauma-informed or at least realistic.
The best example of CBT is OCD, so it has a compulsive disorder.
So that is the perfect example of you have the thought, you do a behavior and it feeds itself.
If you stop the thought or you stop the behavior, it affects the other thing.
Ah, okay, I see. I interviewed someone, my friend Emma, about OCD a while ago.
I remember her talking about that kind of therapy. She had to do that kind of therapy about stopping the thought and stopping the behavior.
That's a standard treatment for OCD.
It's one of the cases in which it works almost always really well.
It's very clear cut.
Now the issue with, say, when I was talking about having what I thought were panic attacks and things is that CBT would then recommend
I look at a worksheet right now when it was happening, seeing what I was doing.
It does a lot of overanalyzing the thing and why it's happening.
If you are causing it or you're exacerbating it because you're fixating on it or because you're anxious, it can give you information or it can make it worse.
So a good therapist will be able to tell what you need from each discipline, but especially for people who are neurodivergent.
I have this issue. I can know exactly what to do if I'm having exactly this function. I know what I should be doing. I know what the steps are. I know how to do them.
It doesn't stop the executive function from happening.
It's a brain wiring issue and there are ways to cope with it or predict or prepare for knowing maybe around this time of day when my meds wear off a little bit.
I'll go back to the list that I wrote when I was on the meds so I don't have to worry about it as much.
But you can only do so much of that. It's not going to stop it from happening.
I started to feel really frustrated because I was trying so hard and doing all the things I was supposed to be doing in terms of cognitive behavioral therapy and I was still bumping into the same problems.
For people who are neurodivergent and don't have a therapist who does CVT properly or well, it can feel a bit like gaslighting.
If you're telling someone who has a sensory issue or for people of color, when they go to see therapists, there are some people who are afraid to go outside because they might shoot them.
You're in real fears. You can't tell that person, oh yeah, it's just in your head. There's a reality and you can talk about it.
But say, that's an unfortunate thought. Maybe it's not going to happen to this person, but it is a reality that could happen to them.
Exactly, yeah.
The therapist can't just go, well, that's an anxious thought. It is an anxious thought for a reason.
It is for a reason, exactly. That's the part where I think there's often times a disconnect even with my sister.
Because my sister does have anxiety. She has generalized anxiety disorder.
So it's very different. Her kind of anxiety is different than a lot of times it's different than my kind of anxiety.
And I know that a lot of times she's just trying to help me with what works for her. I still don't think she's grasped fully that what works for her doesn't work for me.
Yeah, we have trouble with that some. Everyone does. Because we can't lift each other's heads.
That exact issue would say the comparison to other's downloads there being, you know, if you do all the right things you won't have a flare up.
Or, you know, I used to think there were panic attacks. So it's a psychological problem. It's not. It turns out an actual biological, physical, multi-system issue.
And so then being told, oh, you should only do this or you can do that. There's certain exercises I was being asked to do.
And it turns out it was actually making it worse.
Yeah.
Like we have to build up the strength in your arms. I can't do pull-ups or push-ups.
I mean, I can kind of do push-ups. But pull-ups specifically because the joint that connects my shoulder to the rest of my arm will take the weight rather than me using my actual muscle. It just happens.
Yeah.
Then punishing me for not being able to do a push-up, even though I'm doing everything properly, is a bit silly.
Yeah, to say the least.
Exactly. It's like the whole, I mean, another thing it's reminding me of is society's constant obsession with eye contact. And I like to call it out every time I get to call it out because there's still so much emphasis.
And there's like so many times people have assumed that I'm not paying attention to them just because I can't look into their eyes and they don't understand that it's not a matter of just not wanting to.
It's because I literally, not only is it like it can be painful sensory-wise with the autistic side, but it can be with the ADHD side also, it can be harder to focus if I'm looking straight in their eyes. It's easier to focus if I'm not.
It just baffles me because now I understand that myself. I look back on all those times that people would give me a hard time for not making eye contact and I think about how people are forced to make eye contact and abate therapy.
And it's just so baffling to me. It's like because they think that it gets you to engage more and it actually gets you to engage less while causing pain.
Yeah. So I'll have that occasionally where it happens to me a lot during the summer, I think, because the heat exacerbates the others down those flare ups as they were.
I'll be fine, but then I'm stuck in a enclosed space that's too hot for too long and I start to feel really unwell.
And I've gotten really good at hiding it, but there's times where after a few hours of that you just get so tired.
Yeah.
So the chronic fatigue and the chronic pain is something that comes along with it as well. I grew up in everyone's health this way.
That everyone had to sort of imagine what part of their day they would have to take a small rest. To tragically plan your day and the activities you do based on how well you're feeling.
It's hard not to let it take over your life and then being told as a kid, oh, it's kind of in your head or yeah, you're just flexible, whatever.
It's really disheartening because you're like, I've tried everything and it hasn't worked. I've kind of gotten a diagnosis.
It's still not a formal one because the time when I did finally get an appointment with someone here in the UK.
So we have to unhelpful things that professionals do occasionally. You know, it's not the fault of certain medical professionals.
For example, the autism example. A lot of people who are general practitioners maybe have an afternoon with a couple slides.
You know, the specialists on the condition. They need to know enough that they can refer you, but if you have an overworked medical system,
they're not going to spend a lot of time trying to teach the general practitioners all these different things.
Yeah.
Aller's Dallas, for example, because it's also a spectrum and there's so many different subtypes.
There's people who are hypermobile, but it's just a trait. It doesn't actually affect their day-to-day life very much.
And there's people who are much worse than I am. They can barely move things without support because of muscle weakness or because they just keep hurting themselves by accident or they get internal bleeding.
So when I went to this doctor, she took one look at me and she said, did you do ballet? And I said, yes. And she was, I'm from Poland. I also used to do ballet.
I can tell you're a dancer. And I'm like, okay, so maybe she'll understand. Turns out it was the opposite. So we go in and she has this younger student in the course.
I hope you don't mind. We don't usually get people like you who come in. So he's going to, do you mind him being here so he can take notes?
It's also a very common experience if you're neurodivergent or you have anything weird about you. Having the doctors go, hey, everyone, look, look, look, look, look, this weird thing.
I don't know how I would feel about that.
It happens to me all the time. Like, oh, that's interesting. I'm like, I don't want to hear that.
I'm just like, what the fuck is this?
Experiment or specimen or something. I don't know.
I mean, I can see from their perspective it's kind of fun. Not fun, but it's interesting because it's not what they've been taught.
And so they're trying to gather more information on it. So he's sitting there. I'm like, that's fine. And then she goes, so show us what you can do.
We'll put some links in the description to this podcast episode. There's that was done this organization and then there's something called a bait and test, which is a very simple kind of way of checking certain kinds of flexibility and how you score.
And you can bring that score to a doctor. You can do that all at home.
But it's things like seeing how far your thumbs will go down, whether you can touch your toes, whether your arms are longer than you are tall, all of which is true for me.
You know, things like that. Arm dislocation. I wasn't going to do that in front of the doctors.
Thankfully, they're like, I don't want to prove that one to you. They're like, yeah, you don't have to. We know it's painful.
And I thank you. So she's asked, I'm doing the splits and turns and whatever.
And she said, oh, you're very good. You can do your dancing. I can't. That's the problem.
And she said, I, you know, since you seem to be dealing with it so well, maybe it's just hypermobility.
And I'm like, I have. And then I had to start listing out all the different symptoms.
Like I had to bring a little folder. I'm like, so in addition to this, I have what's called blue sclera, which is the thing around your, the color of your eye.
Babies have this little blue line around them. That's because of the collagen. My never went away because it's still there.
So this really thick blue line. There's this thing called pisogenic pavules. I think that's how you pronounce.
So when you put your heel down on the ground, you get these little like lobs of fat really that come off.
Like they look like little dots.
Oh yeah, I almost forgot about that one. Write that one down. I'm like, oh my God.
You know, we thought about that one. Never saw it though. I'm like, okay.
On the one hand, I don't want to discourage doctors from seeking information from their patients because they do need to do that.
But to come in, do all of this and to say here, well, you seem to be managing things quite well.
You know, if you need pain management, I'm like, the pain isn't so bad itself.
It's for me having no other information about what I need to be expecting or how I can prepare for things as my body gets older and this gets worse.
Yeah, we don't. There's not many people specializing it, essentially.
And so that's what I've gotten every time I've gotten, I've gone to a doctor here in the UK.
And it's, for women, it's specifically difficult because a lot of the times it causes such anxiety in people that they get labeled as attention seeking help rejecting.
Is that gets put on there, not online, but I know people have.
And what that basically tells doctors is that it's all in their head.
Often, in my friend's case, who was doing this, she would go in with different symptoms and because it affects different bodily systems, it seems to not be connected.
So one day something might be swelling. The other day she might be dizzy. She might have, you know, this pain somewhere here.
She might have blotchness over here.
If you look at all those symptoms independently of each other, they're multi system kind of symptoms.
So a doctor isn't automatically going to go, Oh, this is all connected because of this thing.
Because it affects so much. It looks like a whole bunch of different things.
And so when she would come in and she'd say, Now I'm having this problem.
And they try to give her, you know, they tell her to do something. She does it and then says it doesn't work.
They, after a certain point, like we don't have the time for you.
You come in looking for medical attention and then you don't do what we tell you to do.
But she did.
She did. Yeah, but it didn't work.
So they were telling her, you obviously have a psychiatric disorder.
So they blame on her. I think.
Yeah, that she's being, she's doing it for attention.
And then I'm eating child. It was that kind of thing.
Wow.
Wow, that's really disappointing because this is reminding me of an episode I recorded recently about eating disorders with Livia Sarah talking about her experience.
And she also mentioned being gaslit a lot when certain strategies weren't working for her.
And, and then, you know, saying that she people saying that she was in her head or like just basically trying to blame it on her instead of taking responsibility.
It feels like the, in the medical community, a lot of people aren't willing to acknowledge that certain tactics don't work for everyone.
And I feel like this gaslighting the patient and blaming the patient is a very common seems to be a good experience.
You're right. And what's sad about is like my friend, she no longer is, but she, you know, had thoughts about taking her own life at one point because she just,
it got so extreme. She felt so insane that everyone she was going to say, oh, it's all in your head. You seem fine. You seem fine. You seem fine.
She said, no, it's not. No, it's not. No, it's not.
That's why, yeah, I just think it's so dangerous.
This whole narrative of people getting called trendy.
It's just really demoralizing when I see like all the effort that neurodivergent people put out there every day with like posting and trying to share their experiences and the ways that they need support in order to succeed.
And then formally diagnosed autistic advocates here in Brazil and all over the place and they get attacked and called trendy that they just want attention.
And it's been, it's sad that a lot of times it's a narrative that gets pushed by the medical community and it infiltrates families of neurodivergent people.
So I follow an autistic advocate in Brazil that does a lot of posting and she posted last week that she was getting a lot of mean comments online from parents of high support needs autistics blaming her for trying to be trendy.
Or like they think that she's taking away resources from their kids, which is not what's happening.
There's not enough resources to begin with.
Yeah, and it drives me crazy because I've been seeing this here in the US on the US surface for a long time.
And I knew it was probably happening to some degree in Brazil too and everywhere else.
But then it was really frustrating to have to see that because I really like this person, this advocate too and like everything she does as well.
And you know that she has to deal with this. So I follow an autistic actress, Chloe Hayden. She was in heartbreak high on Netflix, which I highly recommend.
She had to hand over control of her social media accounts to a team because she was getting so many hate messages and death threats and like suicide prompts.
So that's like, yeah, what my friends, the fuck people have better to do the lives, really.
Like why? And I don't even understand. It's like stuff that has no effect. I still don't understand. Like they get so angry by it and it has no effect on them.
It has like her speaking out about her experiences advocating for inclusion and acceptance.
This person doing the same thing, that person doing the same thing.
There's this vitriol. I don't get it. I think I understand that. I mean, it still makes no, like, it bothers me.
But I get it that with the parents of autistic children, it's because they're being led to believe that we're trying to take away level one autistics online
or taking away from their children's resources and all sorts of things they say, which aren't true.
But then I really don't, it makes me really angry when I get this, when I see that it's non-autistic and non-disabled people doing this.
A lot of people who give me a lot of shit or say it's no-ing or say I'm obsessive about it, will also say, well, you know, there's people who have it worse than you
and you're taking the resources away from them or you're participating in a quote-unquote trend that is taking attention away from people who actually need it.
You're going to overwork the health services. It's people like you who don't need help that are making it difficult for these places to thrive and making doctors tired and ruining our healthcare system.
Right? That's basically the underlying thing there, which is absolutely fucking bullshit.
Yeah, it's bullshit.
Yeah, clearly. Sorry, guys. Bullshit.
Bullshit. Totally bullshit.
No.
You're not discussing that one any further. It's bullshit. Please do with that information what you would like. We're not discussing that one.
Yeah.
For example, having an eating disorder, like I'm in recovery from an eating disorder also, which turns out was in part why the other, I was also dismissed as having others down most because they said, oh, you're a digestive issue is up because you fucked yourself up.
Of course they're going to.
I don't think that's the problem. You know, they'll go, oh, you're not eating enough. That's why you keep fainting.
There was times where I definitely wasn't eating enough and wasn't fainting. So how do you explain that?
They'll say what you've done to your body by underfeeding yourself has caused a chronic condition. So it's preexisting. So it's your fault.
Everything they can do to blame the patient.
To delegitimize what I'm feeling and going this, are they'll say, have you considered that maybe this is just an eating disorder way of thinking?
Or if this is just ADHD as well? And like I have spent a lot of time, often unnecessary amounts of time trying to figure out how the things intersect.
What's one thing, how it affects other things, the amount of medical proper medical journals that I read on the subject is quite staggering.
And so then when you go back to these people who ask these questions and give them answers, their their retort is often, well, why are you so obsessed with it?
We don't want to hear about this anymore.
When someone mentioned the possibility that I might have others down those just one of my friends, I remember seeing it on Tik Tok.
I delegitinized it for myself. I already have ADHD. I'm sure the symptoms are similar. There's some overlap between the exhaustion, the tiredness of the foggy brain and the all that.
I was like, I just, I really think I just have the ADHD and maybe more bitbendy.
And then she started sending me articles about it and I was like, oh, but even me, who is very careful about what I see on Tik Tok or social media sites,
even look at it with an absurd amount of balance, that societal chaos around me, that kind of talk about how this is all trendy and infiltrated my brain.
And that was the first thing that came out of my mouth. I don't, like, maybe I do, but it's not bad enough and I already have ADHD, so like it's enough.
That's what's really dangerous and I think what keeps people from, you mentioned it kept you from seeking help, but like even in terms of neurodiversity in general.
I know that there's so many people out there that are still undiagnosed, ADHD and autistic and struggling and not understanding themselves and then keep, they keep hearing this narrative that they don't have it as bad.
Especially if you are neurodivergent or you have a chronic illness. Certain things resonate with you, even if you're trying not to think about them, your brain will try and problem solve for you.
It's automatic, your brain goes, these two things make sense, it just won't stop. It starts going through the rest of your life and looking at events that never made sense before and trying out the symptoms from this thing on it.
That can be a bit dangerous to do, but it's an unrelenting and unconscious overanalyzing of your own life and your own symptoms and how you think about those things and where you're coming from, what might influence it.
It's a bit CBT-like, let's be honest.
I think it's good that when people start having that realization, I wish that there weren't so much gaslighting from society because I feel like when people, it keeps people from seeking help sooner.
Because I have a friend that I went to acting school with, she started suspecting she had ADHD at the beginning of the training. She took a while, it wasn't until the very end of the training that she went to seek a diagnosis, because she had been told so much probably throughout life that it wasn't that bad,
that she's always made it work or whatever and I feel like society in general does not encourage us to look into that stuff sooner because it encourages us to repress it by or ignore it or assume that everyone has a little bit of that or whatever.
And I feel like that's what happened to her. Wow, she might have actually been able to get more accommodations in the training had she felt like it was okay to seek the diagnosis sooner.
She said that she'd self-diagnosed, but that wasn't for a while and then she got formally diagnosed and Astra had a similar journey, I believe, with her autism.
I just know that that happened so much and so that's why it just bothers me so much still when I see people bringing up the trend theory.
We've done an episode on this also, episode 65. Every time it just drives me crazy because people don't realize that when they comment online calling it a trend, it's not just attacking the people that are coming out as neurodivergent, but it's keeping other people closeted.
Yeah, just thinking about all of this is stressful. The thing that trying to figure out goes back about the connection between neurodivergent people and people with Ehlers-Dongos because often if you have one, you have the other.
Yeah. So they're saying that if you have one, you have the other, but they're noticing there is a high percentage of people say with ADHD who also happen to have Ehlers-Dongos.
And they're looking at how stress and the way that their nervous system, like my nervous system is already kind of dysregulated because of ADHD.
That's a common thing. And then it's further dysregulated by Ehlers-Dongos and all of that is affected by stress, by adrenaline, by cortisol levels, which actually makes symptoms worse on both ends.
So it goes back to the question of how much of what we're struggling with is things we'd be struggling with just in this society generally and how much of it is made worse by the amount of social trauma, the amount of kind of medical trauma, the amount of cognitive trauma that we're having to do and how it actually changes the way our body responds to things and the way our brain works.
So when people are telling other people like that off, it's one thing to not feel like I don't know whether I'm going to twist my ankle today. It's another thing if someone keeps telling me off for being nervous about cobblestones.
Yeah.
Or telling me I'm an idiot, which actually then makes it more likely for me that I'll trip because I get a different chemical reaction in my body.
Yeah, it does. Another thing that came up that I wanted to ask you briefly is, because I know that with ADHD alone a lot of us struggle with sleep.
And so how has Ehlers-Dongos played into that for you and how has there been a relation with that as well?
Yes, I've always struggled with insomnia. Many people with ADHD do. For me what would happen is, it wasn't pain but it felt like I, like something, like my skeleton was trying to get out of its own body.
It just, nothing was comfortable. None of the ways I wanted to sleep was comfortable. It was always too hot, the duvet flipping over and over and over again.
Often I'd wake up in really weird positions where I have, that's how I get dislocated things or I wake up and my hand's been pressed against a certain part of me so that for the next 24 hours it hurts.
Because my body didn't wake me up, it just went, yeah we can do that. Like, no, my hand should not have been doing that. My hand should not have been turned at that angle for eight hours. That's weird.
And it causes exhaustion because pain makes you tired. Then you don't sleep well and then the adrenaline happens. And I did all the ADHD things that were meant to work and sometimes they work but most of the time I just still end up with insomnia.
What I have figured out with this new diagnosis is some things that actually work. So this is why things are so exciting when you finally know what's wrong with it.
Yes, exactly. Yes.
I have answers to some things. So if you struggle with insomnia, if you have ADHD, I can very quickly tell you what helps. Some of it is a bit pricier than I'd like but it is worth it.
Bamboo and eucalyptus sheets, they don't hold heat very well. So you don't get overheated, same thing for eucalyptus or bamboo duvets. It doesn't retain heat in the same way. You don't overheat as much.
That makes sense.
You have certain kinds of pillows because if someone does suffer from orthostatic problems where the circulation doesn't work really well, if their head is at a certain angle it doesn't get enough blood to the brain.
Figuring out what kind of pillow you like. Learning when to take things like neurofen or ibuprofen because those help with inflammation. You don't want to take them too much.
Just knowing these things and knowing how to calm things down so that you're not just woken up in the middle of the night sweating for no reason.
It's things like that. It does cost money to do that unfortunately but it is really worth it. I don't think I've ever slept as well as I have in the past two years.
That's good. Yeah.
Yeah. But that's after years of not being able to sleep probably. Or feeling like I was in pain from lying down for too long, which is the song.
Yeah.
People think that hurt. I got sleep hurt.
Yeah. It is. It's a true struggle. I've also struggled on and off with insomnia. I think for me it would come mainly from hyperactivity and just having too many thoughts in my head and not being able to turn it off or to slow down.
I'll just take NA to HD people that a lot of us seem to have a really hard time falling asleep, like taking a long time to fall asleep. And then usually once we sleep, we sleep for a while.
But then sometimes it does happen with me where I'll wake up in the middle of the night tossing and turning. And it's weird because sometimes I'll be really tired.
Not necessarily in the middle of the night, but even when I go to bed sometimes, I'll be really tired. When I'm going to bed and I'll be just about to fall asleep.
And then something happens. There's some kind of noise that wakes me or just kind of activates me again as I'm falling asleep. And then I can't sleep for another hour or two.
The sensory stuff I think is the thing that people have in common with that. And again, it has a lot to do with stress is that if you are really tired but you're so used to not being able to fall asleep, your body does produce a lot of adrenaline and cortisol and all of that.
And if you're not sleeping, then your body creates a lot more of that to keep you going during the day and it's harder to wind down.
It just becomes this self perpetuating cycle where you have to have adrenaline because you're not getting enough sleep and your body's trying to keep you going. But then the adrenaline doesn't really let you sleep.
Yeah.
That you're tired but you can't sleep, which then makes sensory issues worse, which means that your body's going to regulate its temperature very well, which for me, that means my joints are more likely to dislocate.
It's a whole thing. And the stress of being prepared for that kind of thinking about that cycle every time you go to bed is even worse because you're just like, it's, you're waiting for that moment where it's not going to happen and then you have to be upset about it again.
Yeah.
All of these things really bad for connective tissue disorders and for neurodiverging people.
Yeah.
It's all about the way that so many different mental and bodily systems are affected when things aren't quite right.
Yeah.
My mom used to call me, she said, you have everything where it's supposed to be, you're like, just very fancy sports car. Everything's working perfectly. But the parts for that sports car are really expensive.
So if someone decides to put a pin from a different model, you break it out.
If something goes off and you don't have any way of fixing it at that moment, then the fallout on a lot of the rest of the things that happen to your body, to your brain, to your life is much more extreme than someone who has the basic Honda Civic.
It's true. Yeah, I can see that.
I think the analogy most people with ADHD use is that we have race car motors but bicycle wheels.
Yeah. Yeah.
That makes sense.
You're burning the rubber. Like we have a motor that's like that.
Exactly. Yeah.
And then these tiny little like bicycle or tricycle wheels that are not appropriate for the amount of energy that we have.
Yes, precisely. It does feel like that. Yeah.
Well, those are all the questions I have on my end but I wanted to ask you if you wanted to add anything on your end.
Again, we'll put resources in the description for this podcast about some of the accounts that talk about this have examples also very helpfully people who have had to fight their way through getting a diagnosis for autism ADHD.
And specifically others almost so they have an entire folder of things that you can bring your to your doctor, which is very helpful to feel like you can walk in with this folder of highlighted things because there's an army of people who have the same issues you do.
Are just as frustrated as you are. They want you to be able to have that information. Yes.
We'll put some links to that because that way if your doctor tries to turn you away or they refuse to refer you to another specialist, you do have a list of things that you like well this means legally I do have to be referred.
You can't dismiss this. This hasn't been noted, etc.
So I'm not saying question your doctor, but if you really feel strongly about it and the doctor is dismissing you, they shouldn't be doing that.
Yeah, not with autism. And if you have good reasons and they refuse to look at them, then you need to go find another doctor.
Yeah, definitely. Thank you everyone for listening. I hope you enjoyed this episode. I hope you're able to get a lot out of it.
We'll be posting those links below as X mentioned. I'll see you guys next time.
Bye.