My friends and family think that the pain from psoriatic arthritis and fibromyalgia is the most difficult aspect of my life. For the first few years I also thought that non-stop daily pain was the worst thing that would come from them, but I was wrong.
Never ending story
Since each one of my chronic illnesses were diagnosed, they have taken on a life of their own. Just when I think I have them figured out, a new pain or symptom pops up. In the beginning each new pain or symptom would freak me out. Then my doctor and I would discover that it was just another part of living with my disease that I had yet to experience. While disturbing and not at all enjoyable to have to learn how to cope with yet another pain or symptom, at least it was explained.
The blame game
My frustration began when doctors stopped testing new pains or symptoms. Instead of verifying that the new pain or symptom was connected to my list of diagnosed conditions, doctors began to automatically blame them. The problem was that not all of the symptoms were connected. In one instance, I spent two very long and exhausting years to find a doctor who was willing to listen to me. That pain was nothing like I had ever experienced nor was it associated in any way with my existing conditions. Yet twenty surgeons upon opening my file saw my pre-existing conditions and blamed them. No tests were ordered and no exams were performed. Thankfully the twenty-first surgeon actually listened to me and didn’t allow my other illnesses cloud his judgement. The real culprit was discovered just before it seriously jeopardized my health. Medication side-effects were also blamed on my illnesses. Frequent urinary tract infections had nothing to do with my conditions, but as my doctors and I would later discover they were instead a side-effect from my prescription pain meds.
Lord, give me strength
I am currently experiencing something new that is being dismissed even though there is no relation to my pre-existing conditions. I am not as young as I was when I forged on for two years seeking an answer. I do not have the emotional or physical energy to go through that experience again. I went through the same thing last year and finally gave up on my doctors being the ones who would help me. I accepted the pain for what it was and vowed to not allow it to stop me from living my life or finding a solution. Thankfully, I found an alternative therapy that addressed and fixed the issue.
Everyone always says to consult with your physician before trying anything. But what the heck am I supposed to do when my physicians are the ones giving up? It is like they picked their game pieces up off of the game board and went home. This leaves me, the patient, having to play both roles. I am not a doctor, but yet my doctors are forcing me to figure out the pain and find a solution. Something needs to change. I know that I am not the only one who has experienced this. Too many people with a chronic diagnosis are left to fend for themselves, made to feel like they have lost their minds, or are going to hurt themselves because they are willing to try anything to get some relief. Seriously, what is it going to take? Or do they really not care? We aren’t drug seekers or hypochondriacs, we truly want their help.
Please note that I am in no way suggesting that you do not consult your physician. I am not offering medical advice of any kind; I am just sharing my experience.
Has your chronic condition prevented or stood in the way of having a new and/or serious issue diagnosed and addressed? How much money did you have to spend waiting for a doctor to listen to you? How much time was taken away from your family or work? Was your issue ever resolved?