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
Rodney says
Dear Musing,
Your struggle is familiar. I have migraines, Celiac Disease (an autoimmune reaction to eating wheat) and a rare muscle disorder called Periodic Paralysis. Getting all three diseases correctly diagnosis took 15 years! As each disorder finally got sorted out, I felt vindicated once again. The search was very lonely. I did find a wonderful support group for the Periodic Paralysis. This group has continued to be very helpful to me, and others like me all over the world. Like you said, having a diagnosis is very comforting, and it helps focus my doctors on providing good medical care.
Diana says
Dear Rosalind,
Thank you very much for this important reminder. I wasted a lot of time trying to get people in my life and doctors to believe I was ill. I think this only contributed to my health problems. The real breakthrough came when I myself finally believed I was truly ill. Only then could I start doing more for myself in terms of thinking about getting my life back on track. However, I realize that I am very lucky to have several very good doctors who are working with me, while many people cannot get even one doctor to serve as an advocate; this can have horrible practical implications. I don’t worry anymore about what others think, I ignore all the “helpful” advice from family and friends, and finally I feel much more grounded. My illness has become an intensely personal experience.
Diana