Twenty six years ago. First there were multiple urinary infections. Then numbness that slowly spread from my left elbow to my thumb. I visited numerous doctors who administered many tests. Nothing showed up and there was nothing they could do for me, they told me. I visited many alternative health care practitioners and spent lots of time and money. With no results and no improvement. I was searching for a way to feel better or at least know what was wrong with me, a diagnosis. When the numbness crept throughout my body, I felt desperate to know what this was. I thought it would be so much easier just knowing it had a name and I wasn’t imagining this. Then, when I lost vision in one eye (optic neuritis) and couldn’t lift myself from bed (severe fatigue), the neurologist made the diagnosis: multiple sclerosis (MS).
Here’s the thing: my own internist (family practice medicine) told me that he didn’t think that I had MS and he didn’t think I should accept this conclusion. I was appalled. Here I was, relieved to have a diagnosis, and my own doctor, a guy I trusted and liked, was telling me that it wasn’t true! I feel the sick feeling in my stomach as I remember thinking that he didn’t believe me. Looking back, I know that wasn’t the case – he just didn’t agree with the diagnosis. I ignored him and looked for another doctor.
Over the next 12 years, when symptoms waxed and waned, severe and sometimes mild, I relied on this diagnosis to understand the experience. Yet, having a diagnosis didn’t change much. I was advised by my neurologist not to take any of the drug therapies available at that time because they were fairly toxic and I wasn’t “that†sick. Often, I wondered if others doubted if I really was sick (symptoms were vague and invisible) and there were times I wondered myself
When MRI technology became available and it verified that there was plaque confirming MS, I felt vindicated. I really did have a disease, even if there was still nothing to do about it. But, still nothing really changed. There weren’t good drugs for me to take and I just limped (literally) along with bad symptoms. And, when I developed the brutal symptoms of ulcerative colitis (UC), bloody, uncontrollable stool, high fevers and more severe fatigue, I comforted myself with the knowledge that no one could doubt this was real. There was a diagnosis and objective findings. But still no drug therapy that cured it (only surgery to remove it).
I easily feel the pain of not being believed when I hear others searching to be believed. Searching for a diagnosis. It’s a lonely place. But we can’t stay there. This is when we have to believe that the only thing we CAN control is our mind and how we behave in the face of this.
Rosalind