If you’ve been diagnosed with a chronic illness or disability, you may have experienced doubt as to the importance of getting a diagnosis from people around you or in online spaces. I know I have and that’s why I wanted to discuss this topic and affirm why getting a diagnosis is important. But first, a story.
I had been about two years since I was diagnosed with hypermobile EDS. The signs were all there in my childhood: the intense growing pains in the legs common amongst many of us, knee and ankle problems requiring physiotherapy, hypermobility (which I didn’t know about until I was 30!), endometriosis, mental health issues…the list goes on. If you’re a zebra, you get it.
I despaired over my body for years, especially when my endometriosis flared during periods and when my digestive issues started. I wish I knew what was “wrong” with me!
When a physiotherapist suggested I be assessed for hypermobile EDS when I was 30, I was shocked that nobody had put the pieces together before. None of my previous PTs even told me about the hypermobility! And when I was finally diagnosed a year later, it was extremely validating. And the day before my appointment, I was telling a group of people how excited I was and one told me that I was hinging too much on this unnecessary appointment. You know, a lot of people have hypermobility and it doesn’t cause a problem so why bother?
Well first of all, EDS is way more than hypermobility. The two are not interchangeable diagnoses. They are separate. People with hypermobile EDS display so many more symptoms than just hypermobility. The impact of having defective collagen is widespread throughout the body.
The personal validation I felt when my diagnosis was confirmed was amazing. There was nothing “wrong” with me. I had a genetic defect which explained almost all of my health problems. I was not wrong, I was right! Victory!
In my opinion, this feeling of validation is the most important reason why pursuing a diagnosis is valid and necessary. Usually getting a diagnosis provides information and an explanation. It’s a deepening in the knowledge of ourselves. My body does this because of this. This condition is connected, and this is not, and these are adjustments I need to make.
The second biggest reason is because with knowledge comes a path, treatment options, a way forward. Even for something like hEDS which does not really have much in the way of medical treatments. It means understanding the causes of certain things and being able to approach them in new a novel ways. EDS treatment usually focuses on physical therapy, but there’s a large number of these patients who take charge of their own physical conditioning and with knowledge of a diagnosis, they can find the best way to approach for them and their bodies.
The third reason is because our society is an ableist hellscape and not having to grind one’s (disabled) body to death just for the chance to live. Receiving a disability diagnosis and accepting that as part of me has allowed me to take the rest I need. To slow my life down to the pace it needs to be for me. Having a piece of paper that validates me is nice because having to battle with doctors is difficult enough but the rest of society is just terrible about it.
As you can see from my story above, people will always doubt whether getting a diagnosis is worth the trouble and effort or whether it matters at all. It does matter. Some people avoid diagnoses, saying that labels just harm. A diagnosis is not a label, though. It’s knowledge, it’s confidence, it’s validation. It’s a good thing. Go forth and get diagnosed and give the finger to the doubters.