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 wasnâ€™t imagining this. Then, when I lost vision in one eye (optic neuritis) and couldnâ€™t lift myself from bed (severe fatigue), the neurologist made the diagnosis: multiple sclerosis (MS).
Hereâ€™s the thing: my own internist (family practice medicine) told me that he didnâ€™t think that I had MS and he didnâ€™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 wasnâ€™t true! I feel the sick feeling in my stomach as I remember thinking that he didnâ€™t believe me. Looking back, I know that wasnâ€™t the case â€“ he just didnâ€™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 didnâ€™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 wasnâ€™t â€œthatâ€ 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 werenâ€™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. Itâ€™s a lonely place. But we canâ€™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.