I Felt Like An Outcast Most Of My Life—Then My Diagnosis Gave Me A Community
I became familiar with the experience of isolation well before the pandemic. In fact, I spent most of my mid-to-late adolescence feeling completely alone.
I developed mysterious symptoms when I was just 11 years old: I was in pain all the time, I had unexplained wrist fractures, sprained ankles, and I was constantly using crutches. While I lived with the reality of these ailments, everyone else chalked it up to being unlucky, accident-prone, anxious, or a hypochondriac. At the same time, I was gay and struggling with my sexuality, which added another layer to feeling like an outsider.
How I dealt (by not dealing) with my mysterious symptoms.
Since I didn’t know the basis for my physical pain, I tried to numb the mental pain with distraction. I was a massive Madonna fan at the time, and I spent most of my early twenties sitting outside of her hotel, living in a bubble of escapism.
Getting lost in the mad world of Madonna gave me the opportunity to both be myself and be anybody else. I met new friends who didn’t know about my baggage or my poor health, and for the first time in my life, I was surrounded by other gay people.
I was living in blissful ignorance, ignoring the physical pain, breathlessness, injuries, and difficulty swallowing—ignoring the fact that I was actually at my sickest. So when I turned 24 and finally received a diagnosis of Ehlers Danlos syndrome (EDS)—a group of hereditary disorders affecting connective tissue—it was a big relief. Up to that point, I had no idea how to truly care for myself or prepare for what was to come.
How things shifted when I got my diagnosis.
Unlike other illnesses, there’s no test you can take to show whether you have Ehlers Danlos. It requires a clinical diagnosis, the symptoms vary from person-to-person, and there are 14 different types. There’s often a trifecta of comorbidities, which is related to allergy & immunology, gastroenterology, and autonomic symptoms, but they don’t all have to be present: Some people are just extremely hyper-mobile; some have pain and some don’t; some have chronic fatigue and some don’t; some have the comorbidities, and others don’t.
If your doctor is inexperienced in seeing the entire clinical picture, EDS can be hard to recognize. In other words, my 13 year diagnostic odyssey was not uncommon.
In that span of time, I visited several doctors, but it was a dietitian who was finally able to bring my multi-systemic symptoms under the same umbrella. She suspected I might have Marfan Syndrome (another connective tissue syndrome) and referred me to a connective tissue genetics clinic, where I got my answer.
For a few years, I felt like the diagnosis was all I needed—I didn’t really look into management options or support groups. Then, I started to become even more symptomatic. I developed a liver infection, which triggered my POTS (postural orthostatic tachycardia syndrome), and I ended up in a wheelchair with a very fast heart rate and very low blood pressure.
I went from I’ve got my diagnosis, and I’m not doing anything about it to I need to know more.
How I found support for my EDS.
I took to the internet to seek answers, and there weren't many resources in the UK, where I'm from. So, when I came across an American organization called The Ehlers-Danlos National Foundation (EDNF), I flew myself to their annual conference.
That’s where I finally met other people with EDS and educated myself on my condition. I wished so desperately that there was something similar in the UK—so, to cut a long story short, I flew back and made that dream a reality.
I started out as a volunteer for the EDS support group, then began running the organization myself, and eventually launched an international version. I had no plans of becoming a non-profit manager before this—I was a photographer, but because standing for long hours and carrying heavy equipment was no longer physically feasible, I had to evolve and adapt. Now, being the president and CEO of the Ehlers Danlos Society feels like my calling.
I’m now able to create like-minded communities—communities I never had growing up. While there are plenty of tools I use to help manage my symptoms (mindfulness, law of attraction, meditation, and exercise), my community is one of the most valuable.
We live in such a different world than we did when I came out. Now, there’s so much support and comfort in friends you’ve never met and potentially never will meet—in terms of sexuality and gender, as well as mental health and physical health. Being able to create those platforms through my work feels incredible.
What I want people to know about EDS.
There is no cure and no approved therapies or pain-killers for EDS, so there’s nothing you can just take to feel better. It takes time to find out what works for you: My recipe will be very different from someone else’s, because it’s a very multi-systemic condition that affects everybody differently.
For some people, for example, acupuncture is a lifesaver and to others it hurts like hell. Some people couldn’t live their lives without horseback riding, but to me, it’s painful. I go to the gym anywhere from 3 to 6 times a week, and other people couldn't even think about going once.
Everybody is different, and there needs to be room for those differences—there’s no right or wrong to any chronic, rare, or invisible condition. It’s also important to remember meeting one person with EDS is not a representation of what it’s like for another person living with it.
The condition is sporadic, unpredictable, and it impacts both physical and mental health, as do most invisible illnesses. Despite the difficulties of living with it, EDS lacks recognition, not only in funding and research, but also in friends, partners, and family members. If you think you might be living with the symptoms, fight for that diagnosis: Knowledge is power.
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