Living with an undiagnosed disorder is not something that
was ever in my plans. And yes, I called it a disorder. Disease sounds too harsh
for me to say out loud. I am still hoping this is a passing visitor and not a
permanent resident. I have tried my hardest to stay upbeat and to make the most out of my situation. But I have discovered that being undiagnosed is often a lonely road.
First of all, people don't always understand what it is like to have a condition where you don't know why this is happening to your body. Usually when I tell someone I have an undiagnosed condition they react by saying that it must not be that bad if the doctors haven't found anything yet. What they don't understand is how I went from being partially paralyzed with suspected Guillian Barre Syndrome to having a body that doesn't react well to physical activity. They don't understand that even though I have overcome the paralysis, that I still struggle on a daily basis. They don't understand the pain, fatigue and upset stomach that occur each day for me. They don't understand that I have days were all I can do is curl up in a ball and pray for the pain and fatigue to pass.
The second reason that having an undiagnosed disorder is lonely is that there is no awareness among the general public. There are no runs, no fundraisers, no telethons (do they still have these?), no anythings to let people know that there are legitimate diseases that remain undiagnosed. I guess what it boils down to is that people just don't know. And I'm not sure how to help spread the word that it is just as tough if not more tough to live with a undiagnosed disorder than it is to live with a diagnosable disorder.
First of all, people don't always understand what it is like to have a condition where you don't know why this is happening to your body. Usually when I tell someone I have an undiagnosed condition they react by saying that it must not be that bad if the doctors haven't found anything yet. What they don't understand is how I went from being partially paralyzed with suspected Guillian Barre Syndrome to having a body that doesn't react well to physical activity. They don't understand that even though I have overcome the paralysis, that I still struggle on a daily basis. They don't understand the pain, fatigue and upset stomach that occur each day for me. They don't understand that I have days were all I can do is curl up in a ball and pray for the pain and fatigue to pass.
The second reason that having an undiagnosed disorder is lonely is that there is no awareness among the general public. There are no runs, no fundraisers, no telethons (do they still have these?), no anythings to let people know that there are legitimate diseases that remain undiagnosed. I guess what it boils down to is that people just don't know. And I'm not sure how to help spread the word that it is just as tough if not more tough to live with a undiagnosed disorder than it is to live with a diagnosable disorder.
No comments:
Post a Comment