I don’t know about you, but I was raised to believe that if you felt unwell you’d visit the doctor and they’d tell you what’s wrong and how to treat it. So when you are diagnosed with a condition by multiple doctors, you don’t doubt their diagnosis. I mean, this is what they do, right? They know what they’re talking about. This was the scenario for me for a number of years, even though there was a little voice inside me that desperately declared that their diagnosis was incorrect. I ignored said voice, and put all of my trust into the doctors who were treating me. Even when their diagnosis sent me into a deep, dark depression from thinking that all of my physical symptoms were manifested by my imagination. I was broken and no longer a functioning person in any way, and I didn’t for a moment doubt what they were saying.
I don’t want this to be a strike against all of the doctors in the medical world, but more of an insight into what it’s like for the patient who is relentlessly misdiagnosed. I wholeheartedly believe that most doctors genuinely care about their patients and want to help them, but this compassion often clouds the notion that rare chronic illnesses do exist; that young people do become chronically ill; that sometimes it really isn’t all in their heads. It’s as though they believe that convincing someone that they’re healthy will miraculously make them healthy. Well, it actually does the opposite. We lose faith in our minds and in our bodies, thinking that all of our symptoms don’t actually exist in the world outside of our minds. And that is a nasty and lonely place to be. The physical symptoms don’t disappear, and instead self-doubt amplifies tenfold.
My depression was worst for those four months when I’d lost all faith in myself – I lost a stone in weight; I couldn’t sleep; I couldn’t speak; I couldn’t lift my head to face anything but my lap. I’d followed all of the physiotherapist’s instructions to a tee; I’d exhausted all of the treatment anyone could offer me, and still there was no improvement in my body. The doctors finally decided to admit me to hospital for some inpatient physiotherapy and hydrotherapy in the hopes that if I could see my physical health improving then my mental health would also improve – which in turn would make me even better physically.
On the first day of my stay as an inpatient I was visited by a physiotherapist who specialised in hip and spinal problems. For as long as I can remember I’ve had hip and back pain, and it worsened significantly when I was about eleven. I’d never really talked about it until that point because I thought it was entirely normal, and when I did finally talk about it I was essentially told that the pain was a figment of my imagination. So when this physiotherapist came along, I wasn’t sure how he could help me. We sat with him for a good hour, in which we (mainly my mom because I couldn’t talk much) explained all of my difficulties. After we’d finished explaining, the guy looked at me and said “you bend your fingers back a lot, don’t you?” My mom and I looked at each other with expressions of confusion, and I silently nodded. He then proceeded to bend his own fingers back, and then asked my mom to do the same. It was apparent that my fingers bent back a lot more than theirs did. The physio said he thought I had something called Hypermobility Syndrome, to which we nodded and explained that we’d been told I had “a bit of hypermobility but it wouldn’t cause any health problems or pain,” it was just “one of those things.” He shook his head and went to fetch a colleague, and the two of them then carried out the Beighton Score on me.
The Beighton Score is one of the few things I’ve attained full marks in. The two physios were shocked at the flexibility of my joints, saying I was the “bendiest person [they’d] ever met.” They couldn’t figure out how the doctors hadn’t noticed it, because it was glaringly obvious to them. Then this glorious man looked at me and said “of course you’re in pain. Your body has barely any support and has to work incredibly hard just to keep you upright.” Tears filled my eyes at his words, and I finally began my climb out of that horrendous depression. A few years later I was diagnosed with Hypermobility Ehlers-Danlos Syndrome – the diagnosis that pretty much explained my entire life’s worth of ill health.
Even though I now have the correct diagnosis, I still massively struggle because of those years of self-doubt. I dislocate and subluxate joints you wouldn’t even imagine could dislocate, and I always have done. But I was unaware of that for a very, very long time. There’s now a part of me that concretely believes that my pain isn’t real – even the bone-snapping pain of a joint that needs relocating. This is something I battle with daily, always having to remind myself that my pain is not only real but is also trying to tell me something.
I wanted to include this post in EDS awareness month because I wanted to emphasise the current difficulties that EDS patients face in the search for the correct diagnosis. But all of this applies to many chronic illnesses, not just EDS. Whatever your health issue, please try to remember that nobody knows your body better than you do, and if you say there’s something wrong then don’t give up on finding out what that is. You’re the only person who has to live with your body and its ailments, and it’s your right to know the true reason for those ailments. Keep your chin up, you’ve got this.