Not having an actual diagnosis has been tough for me; for the last few years, when someone asked me what was wrong, I didn’t know what to say. I could spend an hour talking about the cluster of symptoms I was experiencing, the medications I’ve tried and failed, and the research, and the wrong diagnosis, or I could just say I have a few health things going on and leave it at that.
It took me years to realize it, but I began just saying the latter because of the ease of it. I have always been open about my health journey and complications - I have never felt like any questions regarding it were too invasive at all - but at the same time, I stopped sharing anything with anyone. It might have been my new way of dealing with it - not talking about it so I didn’t have to think about it. It might have been because I didn’t want to confuse or bore people. Or, most likely of all, it might have been because I don’t know how to look at someone in the eyes when they ask what’s the latest with my health and simply say I don’t know… no one knows.
It’s just confusing. I can’t wrap my head around everything, so how do I explain everything to someone in a few words? I usually just don’t.
See, every time I go to a doctors appointment, there is a little more light shed on various areas of whats going on. Because of this, I have small updates - a new tumor, a possibility of a connection to a different disease, a new medication to try, a different scan, etc. - but still no diagnosis, no easy answer.
No answers at all.
The last time I had a diagnosis that even kind of made sense with my symptoms, I was 16 and diagnosed with MS. That diagnosis only stood for about 5 years. In 2019, due to a lot of research my mom had done, and a doctor that took the time to sit and listen and dig a little deeper, the MS diagnosis was put into question and all of my doctors were on board with overturning the diagnosis by the end of that year.
The only issue with that is I was never diagnosed with anything else.
All of my paperwork at any given hospital is void of a diagnosis, and instead is replaced with a long list of symptoms.
Most doctors are convinced that I have brain tumors. They just don’t know what type or why or what they will do in the future. They also tend to agree that I have spinal cord tumors, with the same issue, they don’t know why I have them or what damage they can cause.
And honestly, none of that ever really bothered me. Things were stable enough for years, the only reason I knew things were progressing is because the scans would show it. Looking at me from the outside, I was a perfectly healthy person. And I felt like I was too.
Until this nerve pain started up.
It started with an ear ache back in April of 2021, and has progressed to feeling like the entire left side of my face and mouth is being zapped by electricity every second or so.
Because of this, I have been trying much harder to push for a real diagnosis. I’ve been chasing down doctors and trying new medications and scans and procedures and doing anything I can to figure something out.
You can’t treat what you don’t know, right?
All of this is to say that my little head can’t hold all of this confusion any more. Like I said, I don’t talk to many people about this. The less I talk about it, the less I’m able to process it. The less I process it, the less I’m able to understand it. The less I understand it, the scarier it all gets. And the scarier it gets, the more it affects my mental health.
And I don’t need any more mental health triggers.
So here I am, sharing my story and really just word vomiting everything that comes mind because it helps me.