The Mighty Logo

The Inner Turmoil of Struggling With an Idiopathic Illness

The most helpful emails in health
Browse our free newsletters

I have asked myself many times, “Am I really this sick?” I have been on my medical journey for over a decade.  I have been put through test after test and multiple medication trials trying to find answers. How did this happen to me? How did I get like this? I may never know.

I have tried for years to figure this out, eliciting help from my family and a team of medical doctors looking for a reason, and there may be several. Family can be supportive, but not everyone understands what it is like living day to day like this. To wake up every morning knowing you must face the day again dealing with multiple, complex conditions without answers as to how you acquired them, and go to bed at night thinking the same. Sometimes I wonder, usually accompanying a birthday, and I ask myself, could this be the last one I have? What will next year bring? Nobody knows. The answers to my questions may never come.

In a recent encounter with my new primary care doctor, I was giving my health history and he was asking about what other conditions I had.  I started naming them, and as many are rather serious, his response was, “How old are you?”  I told him and he stated that I was too young for these conditions and I had a lot of life left to live. My only response was, “We shall see.”  Also, medical complications do not discriminate. You can become chronically ill at any age.

The doctor then asked for more information and told me that the conditions I have do not just occur and that there had to be a trigger of some sort that caused the initial complication. I told him there was and I gave him my history about how I was diagnosed with my first condition and where I believe it all started.  When I do this, most people do not know what to say, except I am sorry for it is a story of trauma and tragedy.  I do not like reliving it, but I will share small pieces that help connect the dots.  I have opened up many times to past physicians and several have not commented, they just notate what I am saying and move on.

So, there may not be an answer and I may have to accept that. But for now, I’m still plugging along this road.  I try to keep going and keep moving forward but it can be incredibly difficult.  It feels like with every inconclusive test that I have or medication that does not work the way my team has intended, or worse, causes some undesired side effect (I’ve had a few of those with less than acceptable results), that I have reached another dead end.

When it comes to having medical tests performed looking for objective evidence that could lead my team to a solution, I have told my doctors in the past, “I hope something shows up in the results.”  Is that normal?  Is that a logical train of thought? I believe it is, and I am tired of being told we cannot find the answer to what is wrong. To be in this situation is incredibly frustrating. I want to know.

I have been asked in the past by previous specialists, “What if you never find out?”  That may be the case, but I’m stubborn and I have trouble giving up.  I don’t want to give up hope that there may be something out there for me that could improve my situation.  With each test that comes up normal, it feels like a door closes.  However, I frequently find other clues.  They are other bits of information that are discovered in these tests I have submitted myself to that help to clear the picture.  Hence the reason I have ended up with so many different conditions.  Nobody deserves to go through something like this.  We don’t get to choose.  So, in the meantime, I’ll keep looking for an answer.  But, in the meantime, my conditions remain… idiopathic.

Getty image by Alpgiray Kelem.

Originally published: February 11, 2022
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home