Please Don’t Roll Your Eyes When I Tell You I Have Fibromyalgia

I usually don’t tell people that I have fibromyalgia because this admission is usually accompanied by rolling eyes. Fibromyalgia is a unique disease in which many people, including doctors, think we are making it up. In your mind, fibromyalgia does not exist. It’s all in our heads. We need advice, or we seek medicine.

People with fibromyalgia are often treated like depressed vagus seeking opiates. A conversation with a new doctor might look like this:

Doctor: “What brings you to the office today?”

Patient: “I hope you can treat my fibromyalgia.”

Doctor: “Fibromyalgia, hmm.” (Rolls his eyes).

Many doctors don’t like to deal with fibro because there is no cure or real treatment. It is difficult for them to know if their back pain is a test being tested for or if it is simply “fibromyalgia”. Are you having a heart attack or is it “just fibromyalgia?” Are your joints painful because you have a disease or is it just fibromyalgia? New symptoms are often dismissed and left untreated because it is just fibromyalgia.

Patients with fibro have many of the same symptoms as other diseases. Our sensory nervous system has gone crazy. We experience extreme and debilitating pain and fatigue all the time, every day. Everything hurts from the top of our scalp to the bottom of our feet. Just wearing clothes can cause unbearable pain. Some people don’t believe this is possible, so they knock us down. When bright lights, loud noises, or crowds irritate our nervous system so much that we have to go home or refuse an invitation to leave, we get that blank eye. We may want to go out, but after showering and getting dressed, there is sometimes no energy left to leave the house.

Cognitive function and memory are affected. We can’t find the right words for things. Recently I told my husband that the dog should be grilled and not frozen! I meant arranged. Trying to keep an intelligent conversation going can be a difficult task. The words you tell us can also be mixed up. Your words may sound like abstract chatter that doesn’t make sense. If we don’t respond immediately, we’re not ignoring you, we’re trying to find out what you’re saying! We may ask the same question over and over again because we cannot remember the answer. We can stop talking altogether until our scrambled brain reboots.

Our digestive systems are often out of control. Frequent and unexpected diarrhea is a problem, as well as horrible constipation that lasts for weeks. People living with fibromyalgia always need to know where the nearest bathroom is, because we never know when that dam will be broken.

The anxiety and depression of a fibro-warrior can be extremely difficult. Along with the vast number of other symptoms we live with, we also face the social stigma of mental illness: the eyes turn again. Mental illness    is    a physical illness.

Living with these symptoms for decades leaves us physically and emotionally drained. We often have to give up our careers, our social lives, and our time with our families. We wonder how to bear the pain and fatigue one more day, how we will take care of our children, how we will have enough money to survive when we cannot work. Friends and spouses sometimes leave because they can’t handle our illness. Often we can’t leave the house for days or weeks at a time. We are bored and alone.

Fibromyalgia is an invisible autoimmune disease that also makes us vulnerable to other autoimmune diseases. We experience extreme pain and fatigue like many other “respected” illnesses. People with fibromyalgia deserve the same respect as “real” illnesses. We are not lazy. We don’t invent it to get out of work. We are not looking for drugs. We are not crazy”. We don’t deserve to be stigmatized by society because they can’t understand what it means to live with fibromyalgia. Please don’t roll your eyes.

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