When a Diagnosis Is No Longer a Form of Relief


All I have ever wanted was to be listened to.

This has included having my health issues confirmed so I could potentially feel less alone. Eight months down the line of my Ehlers-Danlos syndrome diagnosis, I now experience depression and declining health.

I have had this horrible condition for over a decade so I feel like I should be ready to take on whatever illness life throws at me – but that just isn’t how my reality is. I know I probably sound ungrateful because I now have a list of diagnoses to help myself, but it has taken me over half of my life to get where I am.

I remember in June 2016 when I finally got diagnosed by a rheumatologist, I sat there and cried in relief. I also remember four months later, in October, when a pain doctor refused to help me because I should “already know it is never getting better” –  I cried for two days straight. I had never been so heartbroken in all of my life. Of course I already knew that; I just wanted support.

I guess what I am trying to say is for anyone searching for a diagnosis, please do not rely on a diagnosis as the be-all and the end-all of your problems, like I did. Of course diagnosis opens other doors to be investigated, but having a diagnosis didn’t make things any easier in my case. For me, having multiple diagnoses has led to going to hospital and doctors appointments becoming a main source of my severe anxiety and continuing to contribute to my ongoing depression.

I have met some amazing doctors I will never forget and whom I am forever grateful to, but the harsh reality is my diagnosis has not changed my situation much. I still have to fight as hard as I ever have, I still have to grin and bear the indescribable pain I’m in just to barely get through the day. But I am still me, not just a diagnosis.

I won’t sugarcoat it: getting diagnosed has been the longest and hardest battle I have ever had to endure, and I am constantly in it now. With every new diagnosis, another piece of my heart shatters. (And that’s well over 10 times already!) More often than not I find myself telling myself that “If I didn’t have… my life would be so much easier. If I wasn’t chronically ill, wondering how I am going to get through this all again wouldn’t keep me awake at night.”

My reality, along with many others’, is that this is and will forever be my life; I have limitations, but I refuse to ever let them stop me. I hope other people are able to find the fight with in themselves daily, to enable them to fight back when the odds are against them.

To anybody fighting for a diagnosis, please don’t expect it be the “end” of your problems. Diagnoses can bring new challenges. Pace yourself so you are able to take on board any new information about your health.

Try not to be too afraid to ask for support for fear of being a burden; you will come to realize it is the only way people know how much you are hurting. People often don’t like addressing a situation when they know a friend or loved one is going through something painful; this is no different. Reach out.

If you or someone you know needs help, visit our suicide prevention resources page.

If you need support right now, call the National Suicide Prevention Lifeline at 1-800-273-8255, the Trevor Project at 1-866-488-7386 or text “START” to 741-741.

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Thinkstock photo by Nayomiee


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