When A Diagnosis Eludes You – My Story

One of the worst feelings in the world is the hopelessness someone who has been searching for years for a diagnosis feels when they hear the oh so frustrating words, “I don’t know what’s wrong with you,” or something along those lines. It’s frustrating. It’s heartbreaking. It’s crushing. What’s worse? Being told you have something seriously wrong with you or knowing you have something seriously wrong with you, but being told otherwise?

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Eventually, you may become accustomed to it and even expect it. Some people even give up and stop looking for answers and stop complaining about symptoms so debilitating that they leave you in pieces. I stopped trying to pick up the pieces and move on years ago. I just resigned myself to the fact that I would be like this for the rest of my life and would never really know and that the diagnosis would always elude me.

When Is A Diagnosis A Diagnosis?

I would get a diagnosis only to have the next doctor disagree. You might wonder why someone would go to multiple doctors? It happens typically because symptoms sometimes change, they may go away or get worse or you may develop new ones. Things evolve, things change and that was always what was happening to me. So much so that even I sometimes wondered if it was all in my head. Especially since I had mental illness diagnosis’ as well. Depression and anxiety are something I have had since my late teens/early 20’s.

I went through a lot of different diagnoses‘ and doctors because every time I would see my family doctor and he couldn’t figure it out he would send me to another specialist and none of them could seem to agree on anything. This has been over a period of 20 years or so, so again things change, and sometimes diagnosis criteria change as well.

What’s the point? Why Bother?

Somewhere along the way, I stopped looking. I felt like I was stuck in a rut. I was tired of hitting the proverbial brick wall. I spent years just dealing with things. Sleeping odd hours because I couldn’t sleep regularly. Missing tons of work because I would get so tired I could not lift my head off the pillow or stand up without falling on my face. I would catch every single cold or flu that I was exposed too. I would have them worse. I would have them longer. I could not get rid of them.

I started questioning what was the point? Why bother looking for something when I could just treat the symptoms myself or do things that helped or lessened them and quite frankly I was tired of being told that they could not find anything wrong, or that they could not help me, or worse, that they did not believe me.

Are They Symptoms? Or Are They In My Mind?

I would go through what I can only call “bouts” where my symptoms would increase and I would push through trying to be somewhat functional. I would fake it. I would pretend I was fine when all I really wanted to do was lay down right there on the floor and fall asleep wherever I was, at work, at school, at a friend’s house, on the sidewalk. I would pretend I understood what you were saying to me when really it was a blur. People noticed. I got called out at work for not paying attention, for not listening, when really it was all I could do to even remember where I even was.

I would hold on to the wall when I walked because I was so dizzy, so off-balance and so tired that it’s a wonder I was able to even stay upright, and sometimes I couldn’t. I fainted. I fell. Often. I would blame the falls on being clumsy or not paying attention, and honestly, I wasn’t paying attention, I couldn’t if I tried.

I often get up off the couch only to lose my vision, which can go all blurry or even completely black. I would still move on. It’s a small house, I know where the bedroom is. I know where the kitchen is. I know where the bathroom is. I keep moving till I find them and until my vision comes back, and it always has, it just takes a few minutes.

I sometimes experience pain so bad that it feels like someone is searing me with a branding iron, or stabbing me with a knife. Other times I experience pain that though not high on the scale of 1 to 10 is persistent and lasts so long that at a 3 or 4 that it just leaves me drained and unable to deal.

Do I Keep Going?

This is a question I ask myself a lot. Do I keep looking for an answer? What do you do when a diagnosis eludes you? Do you keep looking for some relief from the pain, the fatigue, the dizziness, the nausea, and all the other symptoms? It’s taken a long time and taken another bout with the symptoms for me to start looking again. To wonder if there may be a light at the end of the tunnel if only I could find an answer, a diagnosis or diagnosis’ that makes sense, one that explains all or even most of the symptoms.

So the answer is YES. Yes, keep going, keep looking for answers, keep advocating for yourself. It can be so rough, so heartbreaking when you feel like you’ve hit a wall, like there is nowhere to go from here, but sometimes you just have to keep fighting for yourself and hope that one day it will all make sense. If nothing else I hope that maybe not giving up will inspire someone else who feels like giving up to not, to keep going, and maybe because of this maybe they will instead get answers and that will make it worth it, even if I don’t.

What’s next?

I know that I want answers. I know that I need them. I know that I get overwhelmed when thinking about it and stressed out. I know that one day I may find the answers that I want and need. I keep looking because even if it doesn’t benefit me, maybe it will benefit someone else. When a diagnosis eludes you, you have to keep fighting for yourself. Typically speaking no one else is going to do it for you. Sometimes you will have someone else advocate on your behalf and if you are lucky enough to have that, that’s great!

If you continue looking sometimes you will find things that help or stumble upon something that make sense and might aid your health care team in diagnosing you. Just be careful not to get so wrapped up in it that it becomes all-consuming and be careful of the information you find. Check it’s authenticity and keep in mind that you still need a professional diagnosis.

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