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An open letter to all those waiting for a diagnosis

For every chronically ill person, there comes a time in their life when they are diagnosed. When someone sits across from them in a doctors office and says the words that they either dread or are relieved by. For some it may be a shock, for others it has been coming for weeks, months of potentially years. If you know it’s coming, there is always a sense of anticipation and anxiety before the appointment. What will happen? Will you finally get answers? How will you react? Ofcourse everyone is different. Some people will cry tears of joy and relief, others of sadness. Some people will be elated and throw a party, whilst others will lock themselves in their room. This may take days, weeks, months or years. 

It can take a long time to get diagnosed. You can be sick your entire life and then one days someone tells you the news that really, you’ve known all along but somehow it still rocks you to the core. 

2 weeks after christmas I’ll turn 19. A week after that I have my appointment. The one that is supposed to change my life forever. Rock me to my core.

When I was growing up, I thought that it was normal for everything to hurt all the time. I get these pain so intense that I can’t sleep. Nothing shifts them and they last for hours. They can happen anywhere from once a fortnight to every night. I thought this was normal. I though that everyone hurt when they stood for ages. I thought it was normal so I didn’t tell anyone. And no body told me it wasn’t normal because they didn’t know. It’s a viscous cycle. 

I was born this way, but no body realised how badly my syndrome affects me until things started to go wrong all at the same time. I was dizzy, I had chronic migraines, I was passing out, complaining of pain, breaking elbows and ankles, not to mention dislocating hips. I got to the point where I couldn’t and still can’t write anymore because my fingers, elbows and shoulders get too sore. I have to type everything now. My abnormal handwriting grip can only be explained through my syndrome. So can my hyper mobility and all over pain. Everything abnormal from my childhood can be explained through it. 

In a way, getting answers and being so close to a diagnosis is comforting. But then you hear that I have trouble walking without crutches, without pain. That I rent a wheelchair when we go shopping. That I’d love a assistance dog and a wheelchair. That sometimes I get migraines so bad I can’t move. That I’ve passed out twice and a plane. That I lost friends because I have an ‘invisible illness’. 

An official diagnosis is an important part of acceptance. Everyone needs acceptance but it is hard to come by. However no one knows how they will react when they here that news. 

Personally, I hope I cry. I hope I cry in front of my mother whilst she comforts me. I want to cry on the same day. So the next day I can be happy. I want to let out 18 years of suffering. I want to be happy and sad. Relieved and overwhelmed. I want it to be over. Even though it’ll really just be the start. 

BB :)


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