Episode 41 – Connection between ADHD, EDS and POTS: Vanessa’s journey through chronic health challenges

Jane McFadden:
Hello and welcome back to ADHD Mums. In this podcast we tackle the tough, often unspoken realities of motherhood, neurodiversity and mental health. Hello and welcome to the next episode of ADHD Mums.

Today we have an episode on ADHD, EDS, POTS and chronic health conditions. Vanessa is a 39-year-old mother of one. She’s a registered nurse who spent 10 years in the public health system, working in various roles in the Royal Prince Alfred Hospital, including education and management, before hitting burnout in 2019.

Vanessa has struggled with a constellation of physical and mental health issues since she was a teenager, including depression, anxiety, anorexia, bulimia, CPTSD, melanoma, cervical cancer, Hashimoto’s and organ prolapse. Prior to hitting burnout in 2019, her health was at an all-time low, suffering from a constellation of symptoms that just weren’t able to be explained. Despite visiting multiple specialists and multiple presentations to the emergency department, no one could give her any answer.

Ultimately, she was told multiple times that she should see a psychologist and her issues were psychosomatic. Nothing more gaslighting than that. Understandably, Vanessa felt completely helpless. Welcome to you, Vanessa.

Vanessa:
Hi, thanks for having me.

Jane McFadden:
Lucky we all love this deep and dark stuff because that’s a bio right there, isn’t it?

Vanessa:
Yes, but I am here and I’m alive and I’m happy, so it does have a happy ending.

Jane McFadden:
You really drove this theme, which I really appreciate because I’ve been trying to find the right person. When you came, you were like, this is what we’re going to do. I was like, great, I love it when people come to me with a theme.

Vanessa:
Thank you. Look, I am no expert on these topics. I can only speak through my own lived experience, but having a medical background has definitely helped me. EDS, POTS and its other conditions really have become one of my special interests and something I hold really dear for a couple of reasons. Really one is it affects women more than men. Like a lot of conditions that affect women more than men, they often go overshadowed and aren’t so picked up.

I know a lot of women who have had years and years and years of really poor health with no answers. It’s something I’m just really passionate about.

Jane McFadden:
I think that’s great. Obviously you’re here because you’re passionate about it and you probably want to raise awareness as to what it is. We do notice that when we are diagnosing ADHD and autism, for example, the medical history and those physical components do help build the picture for us. We do know that they are very closely related when we are diagnosing people. What is POTS and EDS?

Vanessa:
I’ll just quickly preface to say that I didn’t discover my neurodivergence until I discovered my EDS and POTS. For me, it’s really a background story. I am currently going through a diagnosis myself, a presumed ADHD picture. I have a 10-year-old girl who appears very much the same and a husband who’s going through a diagnosis for ADHD. My whole family has just learned that we’re all very neurodivergent. EDS has brought that to the forefront.

EDS is what we call Ehlers-Danlos Syndrome. It is a connective tissue disease. It is genetic. I guess the basis of it is that we produce faulty collagen. Now, collagen is everywhere in our body. We often think of collagen in our skin, but collagen is in pretty much everywhere. It’s in our skin, brain, organs. It’s in our gut. It’s in our central nervous system of our body.

EDS can present in a real myriad of ways that don’t always seem connected. I guess we’ll take a little step backwards before really going back to the EDS. We’ll start off with what is called joint hypermobility. Joint hypermobility is your body’s ability to move a joint beyond its normal range of motion. Now, you can have joint hypermobility that is harmless. So, gymnasts, dancers, they all have joints that can move, that can stretch, and it doesn’t cause a problem.

When we take that to the next step, we have what’s called hypermobility spectrum disorder. That’s where you have hypermobile joints and systemic issues that don’t fit the criteria for Ehlers-Danlos Syndrome. Then you have Ehlers-Danlos Syndrome. Very confusing.

Ehlers-Danlos Syndrome is a genetic condition, and there are 13 subtypes. The most common being what we call hypermobile Ehlers-Danlos Syndrome, or HEDS for short. It is the only one of the 13 that doesn’t have a known genetic marker. So, it’s really hard to diagnose. To be diagnosed with HEDS, there is quite a stringent criteria. And basically, that means it must affect you beyond your joints systemically and chronically.

But if we look at joint hypermobility, we know that if you are neurodivergent, you are twice as likely to have joint hypermobility. And then once somebody has a diagnosis of EDS, you are then seven times more likely to be autistic. If you have a diagnosis of EDS, you are five times more likely to have ADHD. If you have EDS, you are more likely to have conditions that affect your autonomic nervous system, like Postural Orthostatic Tachycardia Syndrome. So, to loop that all back to each other, joint hypermobility and neurodivergence are intrinsically linked.

And if you are neurodiverse, and you have complex chronic health issues, it is worthwhile looking at Ehlers-Danlos Syndrome.

Jane McFadden:
You know what’s really tricky is like how you get diagnosed with that. Because I’ve had a few people tell me to go get diagnosed. And I went, did the genetic testing, actually came back inconclusive. I met with a geneticist and then he said to me, no, I don’t think you have it. But then, I don’t know. Then when you list all that stuff, I’m like, oh, it still sounds like I have it.

Vanessa:
Yeah. And it is really hard. So, because HEDS doesn’t have a genetic marker, and because there’s not a lot of information and there’s not a lot of specialists that are experts in this field. So, I guess the biggest advice I can say is that there’s a 2017 diagnostic criteria that was developed and that is accepted between all the experts. It is a three point system that you can go through and see if you meet that criteria.

Jane McFadden:
Could you send that to me and I’ll put that in the show notes?

Vanessa:
Yeah, of course. That’d be great. So, that diagnostic criteria comes down to three parts. Number one is what we call the score. So, that’s a score of hypermobility and it looks at a various range of joints. So, this is one point, this is one point.

Jane McFadden:
I know people at home can’t see that, but I’m bringing my thumb to my forearm, basically. Just imagine a contortionist, people. Her thumb, when she puts her hand flat on an angle, her thumb actually touches her forearm. That’s what she’s doing.

Vanessa:
And then other points look at the extension of your elbows, the extension of your knees, whether you can touch the floor and how far you can move your fingers, right? It’s not the best score because we know that that’s just a handful of joints and people can be hypermobile in a whole range of things. But basically, to be hypermobile, you need to score above four on that and then above five if you’re above a certain age.

Then the second point looks at systemic issues and then the third point looks at family history and I guess chronic pain. And so, for me to get my diagnosis, it took me a really long time. I didn’t get diagnosed until last year. I came across the diagnostic criteria. I went, oh shit, I make this, which was a real light bulb moment for me because I’ve been searching for answers for a really, really long time.

I took that to my GP, kind, really lovely GP said, I don’t know anything about this and that’s part of the problem. He sent me to a rheumatologist who used really outdated language and didn’t know a lot about it either. I then got sent to a geneticist and she actually did know stuff about it. It was only then that I got a diagnosis.

Jane McFadden:
Okay, so you do need to really go to a geneticist?

Vanessa:
No, you don’t. So anyone can use this criteria to diagnose. The problem is there’s not many people that know about it.

Jane McFadden:
Yeah, that would feel confident in taking you through that. But let’s just say you did meet criteria because I’ve been told I don’t. Let’s just say if I actually do have it, but I don’t know, let’s just pretend because it wouldn’t be the first medical professional to get something wrong. Then what can you actually do about it if you know?

Vanessa:
Yeah, and look, at the end of the day, we know that there are no treatment options really, right? So we know that there’s nothing you can do to fix it, but knowledge is power. So if you know that you have it, you can then seek out specialists who have knowledge of it. So for myself, I’ve sought out a gastroenterologist who specializes in hypermobility disorders. I’ve sought out a physiotherapist that specializes in hypermobility disorders. And so I now handpick my specialists based on their knowledge. And because of that, I’ve been able to really control my symptoms to a point where I can function a lot better.

Jane McFadden:
Okay. So let’s just say if you didn’t have the money or you didn’t want to go through and see a geneticist, but you read about the criteria from the show notes, then you might go and seek out treatment options, knowing that you think you might have it, even if you can’t get this diagnosis. I suppose that would be an option. What about POTS? Where does that fit in?

Vanessa:
If you have EDS, you’re more likely to have POTS. 80% of EDS patients have some kind of autonomic dysfunction. Autonomic dysfunction just means that the parts of your body that you don’t actively have to think about, so things like your heart rate, temperature control, are dysregulated.

The most common example of that being POTS or Postural Orthostatic Tachycardia Syndrome. And basically that means when you go from a sitting or a lying down position to a standing, your heart rate goes through the roof. You then can feel dizzy. You can feel faint. They’re not 100% sure of what actually links those two together. There are several types of dysautonomia and it can affect all different things.

So for me, in the morning when I wake up and I get out of bed, my heart rate’s 140 beats per minute.

Jane McFadden:
Whoa.

Vanessa:
I start getting ready for work and I’m sweating profusely. I’m walking around my house half naked. My daughter is in her dressing gown going, oh my God, mom, it’s freezing. And I’m like, no, it’s not. No, it’s not. It’s hot. And before I actually knew I had POTS, that looks like anxiety. It’s like waking up in fight and flight every single day. It’s awful.

Jane McFadden:
No, I’m just like, I wake up in fight or flight. Like a lot of us that wake up like, bing, brain’s on, like get up. And then I actually feel quite nervous. I went and got tested recently for a genetic heart condition. And they were talking to me about chest pain and stuff. And I was like, this really sounds a lot like anxiety. Like I don’t know which would be which. So when you just described that, I was like, hmm, it’s not normal to wake up every day with your heart racing. And if that’s happening consecutively, that’s got to be more than just anxiety. That’s a good point. I’m not saying you can’t have chronic anxiety. People can. But it’s not normal to wake up every day in fight or flight.

I just did a reel that came out yesterday and it was like, I didn’t know I had severe anxiety until I started this podcast because I thought that everyone felt like that. And then when people were describing their anxiety, I was like, oh, so what does anxiety feel like? Because I thought, they’re just describing normal things. And then how does anxiety feel? And they’re like, that was anxiety. And I was like, oh my God, I have that all the time.

Vanessa:
Yeah. And I get it. For a medical practitioner, it’s really hard to tease that out. Rare diseases are rarely diagnosed. These conditions are conditions that affect women more than men. And there is a huge, long history of medical misogyny where women’s conditions aren’t taken seriously.

Jane McFadden:
Yeah. It’s like ADHD medication and breastfeeding or pregnancy, not research, because it feels like no one cares.

Vanessa:
Yeah, that’s right. They’re not bothering doing any research.

Jane McFadden:
It’s like we’re still being run by people that think women should be at home, just like looking after children. They don’t need medication. They should be happy with their lives.

Vanessa:
Well, they probably got hysteria.

Jane McFadden:
Hysteria and need to be sent somewhere because that’s, you know, you look back at history. No, I’m agreeing with you. It’s like they really should think about what they’re going to feed their husband for dinner. That’s what they should be thinking about, not themselves and their problems.

Vanessa:
I completely agree.

Jane McFadden:
Whatever happened to the burnout, like what are the health conditions? I mean, obviously they weren’t psychosomatic. What happened there?

Vanessa:
With the burnout, you know, it’s not just one thing. Prior to that, I was really unwell. I was really struggling to maintain a really stressful job in the public health system. My health really deteriorated once I became a mum. That’s when things really got tough because I no longer had my coping mechanisms. Before I became a mum, my life really was, I would work and I would sleep. There was not much else. I was either on or I was off. And then when I had my daughter, I had lost all those coping mechanisms.

And so I didn’t get a lot of rest and as all mums do, right? But these conditions, one of the most important things is rest. You need to let your body recuperate. And so I remember the day really quite vividly. Actually, I was at work. I was at hospital. I was managing a busy surgical unit and I was having another episode where I was feeling really unwell. I was dizzy. I was having really bad heart rate fluctuations. I was having muscle weakness. I was finding it difficult to write, difficult to feel my legs. And I couldn’t take it anymore. And I took myself home and, you know, put myself to bed basically.

And it was at that moment that I realised that I just, I couldn’t do this anymore. My beautiful husband got me some help and I ended up in an emergency department on suicide watch. And I eventually got moved to a private facility for six weeks. My health did improve to some extent, but once I went back to normal life, it did deteriorate again. And it wasn’t until I saw a pelvic floor physio. And she said to me, you know, you’re hypermobile and I’d never heard the term, never heard it before. And she said, yeah, you’re really quite hypermobile. And I went home and I googled and I researched and I went down a massive rabbit hole that then led me down this path of actually looking into EDS. And the knowledge has really changed my life in the way that a lot of neurodivergent people say that once they get their autism diagnosis or once they get their ADHD diagnosis, it changes everything.

So for my whole life, as long as I can remember, I just thought I was failing, that I just needed to work harder, that I couldn’t be this tired and in this much pain all the time. Surely I just had to keep going. And knowing the answer has meant that I’ve been able to give myself permission to make adjustments in my life so that I can rest and I can recover.

Jane McFadden:
It’s a really interesting take on it because it’s kind of like on one hand, why would you bother getting diagnosed because there’s no real answer, right? And people don’t really know. And so then what do you do, right? There’s definitely that take on it, but it’s interesting the way you’ve talked about that because people would also say that the same about autism. If you can’t get on the NDIS and you can’t take a med and just a difference in your brain, which changes the way you look at things, why bother? That’s what people really do talk about. And to spend minimum $1,500 to get an autism assessment as an adult takes a lot of time and money. And at the end of it, what do you get?

But you know what you do get? Validation. And I suppose that’s what you’re talking about because you’re getting, okay, it’s not psychosomatic. I actually am in pain and I actually do have these two conditions in my body. They’re real and how can I manage them?

Vanessa:
You’re completely right.

Jane McFadden:
It’s a good point. It’s like, you know, say someone’s got a broken leg and someone says to them, your leg’s not broken. You just got to keep going. And so you keep walking on that leg and it’s getting harder and it’s getting harder. And you’re told again that there’s nothing wrong with your leg. You’ve just got to keep going. Eventually you’re going to break.

And that’s what it’s like living with these chronic diseases because you’re told there’s nothing wrong. So you go, okay, I’ve just got to try harder. I’ve just got to try harder.

Vanessa:
And the pain’s not real.

Jane McFadden:
The pain’s not real.

Vanessa:
That’s right.

Jane McFadden:
But like it is. And so you end up breaking because it’s not possible to function with unaddressed chronic illness. It’s a great point because I hear a lot of people that have been diagnosed medically or there might be other people diagnosing themselves. I always say, well, who cares? Because there’s not only a thousand autistic people allowed in the world. So if someone else looks at the criteria themselves late at night and they go on research and they feel that they meet that criteria and they change their life and feel validated and maybe they tell people and you don’t think they really are, who cares? Why does it matter?

But it’s very similar to EDS because I found it really difficult to get diagnosed. But from what you’ve just said, I’m kind of like, well, I probably could look at the criteria, make some changes. And if I self-diagnose and look after myself better, maybe it’s the reason to do it that I should have done it from the beginning.

Vanessa:
And also, you know, for people that don’t quite meet the criteria, there is this thing that’s called hypermobility spectrum disorder. And the evidence is showing that whether you have hypermobility spectrum disorder or you have EDS, the chronicness of it, the amount of pain is really similar. It’s really hard to tease the two apart. And the reason why the criteria is so strict is because they’re trying to find a genetic marker.

Jane McFadden:
What would you say to people who are maybe listening to this going, oh, I maybe like have some of those, I should look into this. And they’re about to like shut off episode and just go hard on Google. What would be some strategies or tools, practical help that maybe, you know, would fast track some of their learning?

Vanessa:
Yeah, sure. Download the 2017 diagnostic criteria, look at it, see if you meet it. The Ehlers-Danlos Society has lots of really good resources that people can read through. Take it to your doctor because your doctor may not know. A lot of doctors don’t know about Ehlers-Danlos and so you can take that to them and go, look, I found this. What do you think?

If you think you might have POTS or some other kind of dysautonomia, there is a really good resource called the Dysautonomia Project and they have really great resources and tips on how to seek a diagnosis should you want one. And I guess, you know, keep fighting, keep digging. I think for a lot of us that are neurodivergent, when we see a medical specialist and they say no, our immediate response is a foreign response. We go, oh, well, okay, you’ve said no, so I’m not going to look any further. I think sometimes we have to kind of like move past that and keep fighting.

There is community. There are so many communities online. There are communities for Ehlers-Danlos Syndrome. There are communities for POTS. People share resources, link in with those. They would be, I guess, the biggest things I’d say.

Jane McFadden:
And then of course, I suppose, yeah, find the community and feel validated, especially if you’ve been told it’s psychosomatic. That would be horrible. I suppose, yeah, it’s very similar to autism and ADHD, actually. It’s like being medically gaslit and being told try harder and you’re like, I’m trying really hard, but I’m still not able to do this. It’s a really attack on self-esteem and being aware of your body.

Because we were talking about the difference between anxiety and the body. It’s like, well, I don’t think I’m very body aware. And that’s probably me being told as a kid, like I have chronic pain in my body. It’s like, what do you mean? There’s nothing wrong with you? And then you’re like, oh, okay, I don’t have pain. This isn’t real. And, you know, because probably an adult’s looking at a young child like, what pain would you have? Your body’s perfect.

Vanessa:
And, you know, it’s very common for people that have EDS to have these kinds of histories of pain, you know, leg pain, stomach pains, headaches, those things that kids say that we just go, oh, no, you just don’t want to go to school. You know, these things can be really real for children.

Jane McFadden:
Well, Vanessa, thank you so much for your time. I’m going to put in the show notes, all of the links, which will be a lot. And I really want to acknowledge how proactive you’ve been contacting me and getting this information out there. And I think even though we can’t, there’s no magic pill, right? It’s still really valid to seek a diagnosis. And if, you know, you’re struggling to get in with a geneticist, maybe go through the diagnosis tool yourself and have a look and make your own judgment. Because after talking to him, I’m like, maybe that geneticist didn’t know what he was talking about because I talked to him for 20 minutes and he told me I didn’t have it. So now I’m not sure whether that’s true or not, because I’ve never taken one opinion as gospel these days.

Vanessa:
Yeah, definitely. Seek a second opinion. Have another look at the diagnostic criteria. Look, thank you so much for your time, Vanessa. I really appreciate it.

Jane McFadden:
Thank you. The key message here is you are not alone. Thank you for listening. If you enjoyed this episode, follow us on Instagram or head over and join our amazing ADHD Mums podcast Facebook community. Everything you do matters and helps to spread the word about what neurodiversity in females looks like.