I Don’t Know

“I don’t know” can be devastating words to hear or they can be refreshing when you have chronic illnesses.

When you don’t have a diagnosis or a good treatment plan, hearing “I don’t know” over and over again is exhausting and disheartening. If specialist after specialist doesn’t know, then who does? You start to wonder if you’ll ever find answers, or if your health problems will forever stay a mystery.

On the flip side, being lead on my cocky doctors who tell you they can fix you, but actually don’t know whats going on can be just as exhausting. In my own journey, time after time empty promises kept being made, but I wasn’t getting better; in fact I often got worse from side effects of the medications. I do think some of the doctors I’ve seen truly believed they could help me, they just didn’t know what they were getting themselves into.

I’ve only had one doctor honestly tell me they didn’t know. He was a gastroenterologist who is incredibly intelligent and had diagnosed me with abdominal migraines 2 years prior to this visit (this visit was last fall, September maybe?). He was very honest and said he was going to have to research and read a lot because he didn’t know what to do and he didn’t think it was abdominal migraines. He specializes in abdominal migraines, so he knows what he’s talking about as far as that goes. Although it’s hard to hear that someone as smart as him was stumped by my situation, I appreciated his honesty and found it refreshing. I have so much respect for him, and even more now that he was able to admit that he wasn’t sure what is going on with me.

I still don’t have a diagnosis and March marks officially five years of searching for one. It’s frustrating, but we haven’t given up quite yet. I have my electrophysiology study scheduled for the 2nd, and I’m supposed to be starting botox this month. I’m also starting conseling this week (after a mess of appointment cancelations on their part, but thats a whole other post.) We’re looking into seeing another endocrinologist, so hopefully all of this will lead us somewhere positive.

What do you do when doctors and specialists don’t know what to do? I don’t have any great answers for that to be honest; since this is all about honesty. The one thing I do know is, don’t give up. Go to more doctors, try more medications, look into more diseases/syndromes that you could possibly have. Test and re-test for things. Ask questions and demand answers. Self-advocay is a must when you’re chronically ill and it isn’t always going to be an easy thing. You’re probably going to disagree with a doctor at some point, and that’s okay. Choose what’s best for you and your body.

I personally would rather hear “I don’t know,”and try to look for more options than have someone lead me along when they really can’t help me. What are your thoughts? Would you rather be told the truth or have them try treating you when they aren’t sure what they’re doing?

Lots of Love,

Alyssa

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2 thoughts on “I Don’t Know

  1. I honestly would much rather a doctor tell me straight up that they are confused by my case and that they don’t know what is going on than make more educated guesses or send me for more random tests. I don’t need diagnoses to put a label on my symptoms, I want them so that I can seek treatment and a better quality of life. I don’t think doctors like being seen as unknowing, like they have to give up a piece of their pride to every patient they admit it to (so they don’t…). Often it means we have to take it upon ourselves to search out new doctors with fresh ideas on our own and do a fair bit of the research too. We ‘the chronically ill’ live in the land of “I don’t know” a lot, huh?

    Liked by 1 person

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