I’m Afraid to Treat the Symptoms of My Undiagnosed Illness

Are there steps I could take right now, this minute, and this second? Sure. After all, there has been plenty to read. Some elimination diets are heralded to stop inflammation, which is the precursor to any autoimmune disease, and therefore can help stop the progression of the disease. But the next website says if you have “this” do not eliminate anything. Vitamins and supplements can be complimentary to any treatment plan. However, the particular supplements depend on what’s wrong with you.

There are additional practices that can benefit anyone, regardless of disease, such as yoga, meditation and exercise — some of which I already do when I can. I could definitely make these things more of a priority, especially meditation which requires very little of the sometimes lacking energy I do have.

There are enormous amounts of information to read and process and decide if it is worth trying. Understanding, of course, that some is rooted in science, which can be faulty in of itself, and some is more functional or homeopathic in nature. And some, complete balderdash.

Ideas, suggestions, routines, treatments, claims, plans — all are at my fingertips initiated by a simple search. Yet, all I do is read about them. Why?

Because I lack a “this,” a name, a definition, a diagnosis.

I am not looking to stagnate in misery and pain. I know I could make changes today that may alleviate symptoms.

But, that is exactly what I am afraid of.

I don’t want those things to disappear because they are clues to what is happening inside my body. I have some hard evidence, blood tests and diagnostics. They aren’t definitive though and I think the symptoms will be the key that unlocks the mystery. If those go away, I think the doctors will stop searching for answers and I will get more of a “you don’t look sick enough” or “we treat patients not numbers” response.

I am pretty, healthy looking, funny, articulate and I don’t use any assistive devices so many people have come to need. I simply don’t “look sick.” I go to work every day, take my daughter everywhere she needs to be, make dinner and do laundry. Mostly. I credit a high pain tolerance and an extraordinary talent in denial. Because of these things, I am dismissed.

I do not need or want the diagnosis to define me. It won’t be me, just a part of me. And like everything else, every other part, I need to reconcile it with the whole.

To be brutally honest, I also want the excuse, the excuse for being tired, all day, everyday.

I need the excuse for when I can’t tolerate the temperature whether hot or cold, when I need the heater in the car to direct at my feet because if they get cold and turn colors, they won’t warm up until I take a shower.

I want the excuse, the reason for not having the heat in the car blast at my face off the windshield because then I can’t breathe. I want the reason for all the blood tests, imaging and doctor’s appointments.

I want the reason for the emergency stops at gas stations for allergy medicine because something has me reacting and if I don’t take Zyrtec it will mean the emergency room.

I want the reason, excuse for why I can’t tolerate the TV any higher than “six” on the volume level.

I want the reason for why I lose track of why I was telling a story, or the word I wanted to use. Or, if I manage to get the word out why I switch syllables around or interject unneeded letters.

I want the reason why (almost daily) I choke on liquids, and the span where it was food and pills too.

I want the excuse as to why I am always dropping things or knocking them over. I want the excuse, the reason, the name, so when these things happen I don’t call myself lazy, clumsy or picky.

I want the name, the diagnosis I can give to others so I can say, “See, there is a reason!” So maybe, they won’t look at me the way I sometimes look at myself. And maybe, just maybe, they will see the need to sometimes take care of me instead of me taking care of everyone else.

So, for these reasons I read, a lot. I have learned copious amounts about autoimmune disease. I compare symptoms. I push and I advocate, as much as I can without letting anyone know my M.D. credentials came from the internet. I think my legitimate R.N. credentials work against me.

For now I cope and manage, and once I have a name, I will stick out my tongue at everyone and dance.

Editor’s note: This post is based off an individual’s experience and should not be taken as medical advice. Please see a medical professional before changing your treatment.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.