The Relief I Find in Sharing My Story After Years of Misdiagnosis


Being able to tell my story has been a sort of relief valve, allowing me to talk about the frustrations of a misdiagnosis and then living with an “invisible” illness on a daily basis. It is comforting to know I am not alone struggling through each day, yet my heart breaks for each and every person and their own personal situation living with such an illness. We all wish we could leave so much of this behind us. Yet we are a support system for one another, because whether we like it or not, our lives have changed, and we have a new “normal.” And that continues to change often, even daily!

My Body Has Changed – I Have Not

Personally, it has been surprising to see so many friends drop away (and even a spouse in my case) when you become ill and cannot do the things you used to. It is frustrating because I am the same person on the inside as I was before. The thing is that health issues can suddenly affect anyone, and perhaps it is a defense mechanism to not think about it and the fact it could happen to anyone. The other part about telling my story was the fact I was able to share my difficulties with our medical system and the struggles I had to get a proper diagnosis and to get doctors to believe what you are telling them. I am still paying for their misdiagnosis, trying to get off medications they had me on that I did not need to be put on to begin with, but which my body has now become reliant upon, as well as the needless thousands of dollars that were spent for nothing.

No Easy Answers

I wish I had an easy answer for those struggling with so many different “invisible” illnesses, but there aren’t any. This type of project (“This is Me”) at least makes people aware that we are out there and maybe will get others thinking about it in a new way. It is too easy to take good health for granted until it is taken away from you. To leave a career and activities you loved and then have people leave you behind is very difficult. It is essential to create new things in your life to make you feel like a productive part of society, no matter how small those things might be. In my case, dysautonomia/POTS (postural orthostatic tachycardia syndrome) has been the culprit, but I fight every day not to let it win over my spirit and the values I hold dear. Some days I win and other days not so much, but we have to keep on fighting. Thank you to the Invisible Disability Project for letting us share our experiences!

By: Dan Peterson

This is Me is an IDP educational media project that disrupts the silence around invisible disabilities. If you would like to participate, sign up here.

See more from the This is Me project here.

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