How Can I Have a Disease I Don’t Even Believe In?

One evening, as my husband and I sit down for a deli meal, I find myself struggling to lift my sandwich (Fibromyalgia?). It’s too heavy! This is not a supersized sandwich, just the ordinary meal I have ordered many times before. My arms literally cannot bear the weight. Am I going crazy?

Not knowing what my husband’s reaction will be, or what to do about this odd predicament, I say nothing. Later I notice I have difficulty in carrying my purse or even my coffee. My husband takes up the position of purse carrier. I feel as though I have the flu. Severe fatigue overcomes me, and my skin burns.  I try to ease the burning sensation with peppermint lotions, cooling creams, ice — you name it! But nothing helps.

Maybe my rheumatoid arthritis is taking a turn for the worse? But it does not feel like my familiar arthritis. I don’t have any idea what is happening. These are the strangest symptoms I have ever experienced. Fear and isolation have become my new companions. Who will ever believe me?

I cannot go on feeling this way. It is difficult to keep up the pace at work and I am falling behind. The fatigue is overwhelming.  Every spare moment is spent lying on the couch. The couch and I have established quite a relationship.

My coworkers cannot understand the changes they see in me and I don’t know how to explain it, so I say nothing and wear a strained smile. Only when I have used all my willpower just to get through the day do I make an appointment with my rheumatologist. I attempt to explain the wide array of seemingly disconnected symptoms to my physician. I am hesitant to talk about these strange sensations for fear she will think I am off my rocker. But she listens, and then proceeds to press on different parts of my body.

As she places her hand on my back, I start to tell her, “That is not where it hurts.” But I don’t have a chance to finish. I cry out! My physician completes her exam, leaves the room, and returns a minute later with a brochure on fibromyalgia. She tells me that I have FM. I am dumbfounded. All I can do is stupidly blurt out: “How can I have a disease I don’t even believe in?”

FIBROMYALGIA REALITY CHECK!

The word “fibromyalgia” previously brought up judgmental feelings in me. Although I would not admit it while on the job as a registered nurse, these disapproving images were on my mind. I admit that I did not have the empathy I should have had. On the outside I appeared compassionate, but my inner voice would spout off: “Oh boy, here we go again—another med-seeking patient.” My sister-in-law with Fibromyalgia complained to me of assorted aches and pains.

Even though I tried to listen and understand, I did not. I was ignorant and uneducated about Fibromyalgia, and for that I am truly sorry. Immediately after leaving the rheumatologist’s office, I am off to the airport to fly to Oakland on business. I am dazed, stiff, and zombie-like. I lay my head against the airplane window and repeat to myself, “Why me?” The woman seated next to me tries to make small talk. She can see I am in a bad state. I cannot hear her. I try not to think about the diagnosis I have just received. Maybe it will just go away.

A colleague, another registered nurse, meets me in Oakland for dinner. That night I tell her what my doctor had said. I am looking for consolation and comfort, but instead she replies, “My advice to you: don’t tell anyone. They won’t believe you.” I am now on the receiving end of a lack of empathy that I had once exhibited. I am getting a taste of my own medicine, and it is leaving a very bad taste in my mouth.

My health soon deteriorates and I have to take time off work to put my life back together. For the first few weeks I am only able to walk around the house, but little by little I am able to get down the driveway, then around the block. I read many books on Fibromyalgia and educate myself. I join a support group and find many women and men who do not fit the stereotype we so often hear about.

These are hopeful, empowered, driven people who are fighting hard to live productive and happy lives. I tell my story to the group—and the superficial question I had posed to my physician when diagnosed. “I bet you believe in it now,” the support group facilitator says. The group laughs with understanding and compassion. I am accepted—and humbled—by the experience.

LIFTING THE VEIL

Since my diagnosis, I have become active in bringing more awareness to others about Fibromyalgia. I volunteer, talk to people (including healthcare professionals), and keep my health and attitude in check.  There has been a shift, albeit a small one, in some of the healthcare professionals. I have watched physicians change. Now they ask the right questions, show a willingness to learn, and work to provide appropriate treatment modalities for those with Fibromyalgia. I have seen their awareness and compassion emerge. There are definite signs of evolution out there. The veil of disbelief is lifting.

That initial question I posed to my doctor sparked a journey for me. I was left to deal with my own opinions and prejudices toward those with Fibromyalgia. I also had to come face-to-face with the harsh judgments and stereotyping by my peers, fellow registered nurses. I am now a patient on the other side of the fence. I was set on a path to reconcile my feelings and find ways of assimilating this disorder into my life. How will I manage my health? The stigma surrounding Fibromyalgia has stared me directly in the eye — and I am staring back.

Who will ever believe me?