The Duality of Diagnosis: Why I Have Conflicting Feelings About Finding a 'Label'

It’s been over two years now since the sudden onset of my symptoms that included pain, fatigue, brain fog and autonomic dysfunction. At first I was scared I had a serious degenerative illness, but at the same time hopeful that the symptoms would resolve and simply go away, as my doctors assured me they would. Many negative tests and specialists later, the doctors reported they could find nothing wrong with me. I learned through personal experience that if something can’t be measured, it doesn’t exist according to modern medicine. This was both comforting and frustrating. I had a desperate need to believe the doctors. I tried to. I wanted to.

Some time later, fear and hope evolved into frustration. Frustration from hurting all of the time, and with my body for betraying me. Frustration with the medical establishment for abandoning me. No diagnosis, no cure. Over time, I found myself at the doorstep of acceptance. Some days more so than others, depending on how severe my symptoms were. Throughout this journey, I was desperate for a diagnosis, a label for my malady. Even after I came to accept the reality of my condition, I still wanted a definition, so that my logical mind could understand it and put it into the context of my life, my being.

I wanted to believe there was nothing wrong, so I made up stories for myself. That I was subconsciously making this happen, that I must be depressed, or lazy, or that some deep psychological repression was manifesting itself in my body. I also desperately wanted a name so I could hand it to others in a neat little package that gave them a tidy explanation. It was exhausting and frustrating to try explaining what was going on for me. “I hurt” was met with, “Oh, I have pain too. It’s just part of getting older.” Or brain fog. “It must be peri-menopause. That happened to me too.” The exhaustion. “Well, if you take X vitamins and eat Y, you’ll feel so much better.” People were trying to understand by making a connection, finding something they could relate with and offer to me. It just made me angry.

I recently saw a doctor who found a label for me. Or two. Ones I don’t want. It suddenly occurred to me that I don’t want a diagnosis, and I don’t want to be “labeled.” I want people to understand what is going on, but I don’t want them to make assumptions about me. I don’t want to make assumptions about me. Fibromyalgia. Lyme disease. It feels like surrender. This is real. Not something to be ignored or imagined away or to “just get over.” Give up and give in. I don’t have a choice.

Or maybe, I can truly give myself permission to be ill. Allow myself to grieve for the healthy, pain-free person I used to be. My process of acceptance is owning the gravity of all of this without letting it define me. But there are some days, some moments it does define me. I struggle to accept that. Denial has gotten me a long way. It is both comforting and revolting at the same time to say, “I have this disease.” These labels help people to understand that I really am chronically ill. It also labels me.

What I, and others, need to understand is that I have already proved that these conditions don’t define me. I’ve spent the last two and a half years alternately fighting and trying to accept my limitations, and despite them, I have accomplished amazing things. Building a house. Winning a big competition. Staying very fit and taking good care of myself. Some days simply going to the grocery store, or to a social event, have felt just as challenging, exhausting and satisfying to accomplish. After all is said and done, I get to define what these conditions look like for me.

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