Diagnosis Dignity

Tuesday 9th Jul 2024

I have suffered a lifetime of pain and of symptoms and issues and injuries. Every blood test and scan was normal. And yet I knew something wasn’t right. It simply isn’t normal to be wearing thermal clothes in summer and your knees swimming about in the middle of your leg.

Over and over again I was told that it was one of those things, it was in my head, it happens to everyone. I mulled these comments never quite believing them. After all after so many decades I seem to have a lot of injuries and accidents.

I seemed to have cope relatively well over the years with having a connective tissue disorder I didn’t know about. I seemed to have held down various jobs and roles and given it my all and was ok?

Well the truth was I wasn’t coping. I see that now. I was in pain, I was in burn out, I was in agony. But yeah, there was nothing wrong with me was there. So I pushed and pushed and because I have a wonderfully stubborn streak, I carried on and I challenged myself and did more and more. Because everyone else could so I assumed I was like everyone else. Because the doctors told me I was fine and normal.

Reasons why diagnosis is so important

I feel very strongly about these especially because I spend time thinking about how my life could have been less painful had I been diagnosed much earlier

Early Treatment & Self-Care Management

Had I been diagnosed earlier then I would have been able to learn to care for myself better, learn about my condition sooner and heal better when I was younger. As it was it took 4 decades and I’ve collected a lot of scars and issues that could have been easily averted. Things could have been very different.

Self Love & Self Acceptance

Had I been diagnosed earlier I would have learnt to myself so much sooner. I grew up and lived in such confusion and often felt a failure because I didn’t seem to live like others. I felt it was my fault because again those tests kept coming back normal. Hard to love yourself when you feel awful all the time but everyone says it is normal.

Medical Care & Management

My eye experience was the first time a medical team knowing my hEDS diagnosis, took this into account for my medical treatment. Laser surgery (retinoplexy) was chosen because invasive surgery was deemed not a good thing for me. Given that when I have had invasive surgery some quite scary stuff has happened that kinda made a lot of sense. So knowing I had hEDS would have been very helpful a decade ago when the scary surgeries happened.

Organ Donation Issues with Tissues

A while back I had kittens thinking about my poor wound healing and organs being very lax tissue wise. I was thinking about organ donation and panicking a bit about how I would fail the person I donate to and it would not work well in their normal tissue body. And then I found out that actually once you are diagnosed with EDS you are no longer eligible for organ donation (as in you cannot donate) I am hurt that I won’t be a help to those when I die. But actually there is something I am thinking about - more to come on that.

Diagnosis Dignity It matters

some medics have said “what is the point of a diagnosis when there is no cure?” Yes they have said that. And my point is DIGNITY. We all deserve space and place in this world and the dignity to be diagnosed. Yes I am well aware that there is no cure but does that mean I don’t deserve to have that diagnosis. Knowledge is power. And I can do something with that diagnosis and as in point 3 it DOES MAKE A DIFFERENCE TO TREATMENT. I know there are issues with the NHS and while I would love a holistic management of hEDS I am grateful and privileged to be diagnosed. IT HELPS so MUCH.

I urge medics to pay heed to my list above because so much matters when you get a diagnosis. I have fellow Zebras at their wits end without that all important diagnosis. They have said that they don't feel part of it and that they have a sort of imposter syndrome. Which makes me feel very angry that they have been let down by the system. Getting a diagnosis is not easy and is often overlooked and dismissed. We can do better. We must do better. Lives are at stake.

When I reflect on my own hEDS journey, I have a sense that I am learning about myself backwards and have 40 years catch up to get through. That is a lot of homework to get to!

But with a diagnosis I feel empowered, I feel that so much makes sense, I feel that I can better understand myself. Why wouldn’t anyone want that?

I hope that wherever you are on your diagnosis journey that you get that diagnosis. It means a lot.