My name is Jess, I am 23 years old and was diagnosed with hypermobile EDS (hEDS) aged 20 after over 18 years of problems.
I have always enjoyed using my flexibility to my advantage and tried to keep myself strong through dancing to a high level. I also recently qualified as a Paediatric Nurse in order to use my experiences living with chronic illness to help others.
“Hi, my name’s Jess. I am 23 years old. I suffer with Hypermobile Ehlers-Danlos Syndrome and many of its associated comorbidities, including PoTS, Mast Cell, and I have major gastro involvement with my Hypermobile EDS.
I have gastroparesis, pan-enteric dysmotility, and intestinal failure, and I am also a qualified children’s nurse. I work in pediatric cardiac in Newcastle.
I live in the Northeast of England and I was diagnosed with EDS when I was 20 years old after suffering with symptoms and signs for over 18 years. I think I’m here today because I am so passionate about people understanding pain related to EDS, and particularly gastro pain, so that’s what I’m going to talk about.
I think I’ll start by saying that what people don’t understand about chronic gastrointestinal pain related to EDS, is just how much it affects every single part of your life and your functioning. And it changes who you are and what you can do because of the amount of impact it has. My pain with my gastro problems started when I was 15 years old, and I had an endoscopy for a routine procedure because I have Celiac disease and after that endoscopy, I woke up in absolute agony.
Since then, so nine years on, I have gastro pain every single day of my life and it’s led me to be, at different times, dependent on parenteral nutrition and enteral nutrition. At the minute, I am jejunally fed because I also developed an SMA, which is a vascular entrapment known as Superior Mesenteric Artery Syndrome, which also contributes greatly to the pain that I get with my gastro system.
I’ll start by saying that there’s so many types of pain. And I think that as a patient, that is one of the hardest things that we can struggle to communicate to other people, whether that be medical or nonmedical. Because no one, describing pain’s really difficult and anyone who’s had pain at any point, which is obviously, pain is a universal thing, and anyone with any type of chronic condition is likely to have experienced pain and anyone with Ehlers-Danlos syndrome is likely to say that they experience pain very regularly in many different parts of their body.
But, there’s stabbing pain, shooting pain, nerve pain, chronic pain, and trying to unravel where your pain’s coming from to be able to communicate that is really, really difficult. I am also really passionate, from a professional point of view, about validating people’s pain because pain is something that is unique to you. No one else knows the pain that you experience and it is what the person says it is and I endeavor in my practice to use that concept because there’s been many times as a patient where I’ve been told, ‘oh, jejunal feeding can’t cause pain’, ‘you can’t be in pain’, ‘you’re in tPA’, and ‘you can’t be in pain because you haven’t eaten’. And no one understands what it’s like to spend every single day of your life in pain, unless you do that.
I think that sometimes that validate, that sort of gaslighting, in a way, and the ignorance can have a massive impact both physically and mentally on the person that’s experiencing it. I know, especially for me, trying to work and live any kind of normal functioning life with that level of pain is very, very difficult. And that’s one of the hardest parts about being in pain. It’s not the pain itself, but it’s the belief by professionals, by people around you, and being believed that actually it can affect you so badly that you struggle to function.
There are very, very many misconceptions, I think, particularly around gastrointestinal pain because it’s very hard to see, and it’s not like a broken bone where you can see it on an x-ray and people associate broken bones with pain, they know that that is a correlation. People do not understand the relationship between, EDS, the gastrointestinal tract, and the pain it can cause, so therefore, there’s many misconceptions and many people that don’t believe in it because it’s not seen on a scan.
I have been in Accident and Emergency and have been in absolute agony, but will never rate my pain a 10 out of 10 because I always feel like you never know when your pain’s gonna be worse and there’s so many people that, I think, suffer with pain and just don’t talk about it because they have sort of adapted and adjusted to that being their way of life. For me personally, I know that I’ve had to alter my, and I have altered my tolerance to pain. Whereas when I was younger, the pain I experienced probably I would have reacted more badly to, whereas now I’ve learned how to function with that pain. Not always, and everyone has bad days, good days, and days in between, but after being misdiagnosed and undiagnosed for so many years, between my gastro pain starting and it coming back, me getting an answer to it, was five years. And that’s a long time for people to be going, well, your x-rays are clear, your bloods are clear, everything’s clear, your scans are clear, you’re fine. And people try and convince you that it’s in your head.
If you suffer with chronic pain as an Ehlers-Danlos patient or a hypermobile spectrum patient, then I absolutely empathize and sympathize with you because I know what that’s like to be in a position where no one understands what it feels like. I spent years not being believed and even now, there’s still a lot of controversy about how bad pain can be. And as if, as a professional talking to other professionals, if your patient is telling you that they’re in pain, and specifically if they have EDS and they’re telling you they’re in pain, please believe them, please listen to them. They live with this every single day, they live with the understanding that this condition is lifelong, this condition is chronic and it needs management. It doesn’t need to be brushed off as if it doesn’t matter.
I think that moving forward, and if we look and concentrate on how we can improve pain management, especially in the gastrointestinal system and from things like gastroparesis, you’ve got to understand that there’s many factors that play into that. A lot of people can be obviously triggered by food, a lot of people can be, some people trigger by tube feeds. Even, people get pain from just even if they’ve eaten and drank nothing can still feel pain and I think that we need to work on understanding, first of all, the anatomy and physiology behind that and how, and I know that there are obviously individuals who do have that specialist knowledge, but trying to spread that knowledge out to more general practitioners, not general practitioners, but general areas of practice because that is something that needs to be understood in order to be able to treat the pain that people feel in the most adequate way. I’ve only recently found out, I thought that for all these years, the pain that I felt was likely to be sort of like a muscle pain, and actually, I’ve recently found out that it’s actually probably a nerve pain, and understanding that is a game changer because that changes how you look at the treatment.
Moving on to treatment, obviously, a lot of people with gastro pain and with EDS end up on opiates, and we all know anyone who knows anything about EDS and gastro knows that opiates worsen that situation and make it harder to manage. But I know as a patient who has been in pain trying to just live my life, sometimes that’s the only option you have because you’re not being offered anything else. And sometimes there’s nothing else on the table that works. And when there’s limited pain relief available, you get to a point where you think, I’ve got to just take what is there because I need to live my life and I need to function. And for me, for example, it’s where not actually can I go to work today and have opiates or can I not work and not have the opiates? And you’ve got to look at how actually the pain is more than someone’s, it’s someone’s life, the pain, and we need to grow and understand the reasoning behind the pain in order to treat it. And I know many people are labeled as drug-seeking, opiate-seeking, and all of that kind of thing because there’s just not enough understanding and there’s not enough knowledge.
If you are an Ehlers-Danlos patient, advocate for yourself, speak up, explain that you are aware of the risks, and look into options, speak to people, get different suggestions and knowledge because at this point, knowledge is power and I think we need to widen that research base, we need to widen the publishing around that and try and build a better pain work structure and plan for people who have EDS and the gastro problems that are related to it. And for me, that is something that I would love to be able to do in my professional life and in my personal life to be able to spread awareness of the fact that this is a lifelong painful condition, but that we need to work on how do we manage this and how is it best treated, what is the best practice, and how does that translate in the world. I hope that’s been helpful and thank you for listening to me.”