I don’t normally tell people that I have fibromyalgia because this admission is often accompanied by the eye roll. Fibromyalgia is a unique disease in which many people, including doctors, think we are making it up. In his mind, fibromyalgia doesn’t exist. Everything is in our heads. We need advice, or we are looking for drugs.
People living with fibromyalgia are often treated as depressed bums 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 eyes).
Many doctors don’t like to deal with fibro because there is no cure, and no real treatment. It is difficult for them to figure out if their back pain is something to be tested for, or is simply “fibromyalgia.” Are you having a heart attack or is it “just fibromyalgia?” Do your joints hurt because you have a “headache”? Disease or is it just fibromyalgia? New symptoms are often overlooked and left untreated because it is just fibromyalgia.
Fibro patients experience many of the same symptoms of 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. Simply wearing clothes can cause excruciating pain. Some people don’t think this is possible, so they turn our eyes. When bright lights, loud noises, or crowds are so irritating to our nervous system that we need to go home, or we decline an invitation to go out, we have that blank eye. We may feel like going out, but after showering and dressing, sometimes there is no energy to get out of the house.
Cognitive function and memory are affected. We can’t find the right words for things. I recently told my husband that the dog needed to be roasted, not frozen! I meant fixed. Trying to have an intelligent conversation can be a difficult task. The words you tell us can also be mixed. Your words may sound like abstract babbling that doesn’t make sense. If we don’t answer you right away, we are not ignoring you, we are trying to figure out what you are saying! We can ask the same question over and over again because we can’t 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 is 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 break.
The anxiety and depression of a fibro warrior can be extremely difficult. Along with the myriad other symptoms we live with, we also face the social stigma of mental illness – the eye rolls again. Mental illness is a physical illness.
Living with these symptoms for decades leaves us physically and emotionally drained. We often need to give up our careers, our social lives, and time with our families. We worry about how we will endure 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 cannot handle our illness. We are often unable to 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 susceptible to other autoimmune diseases. We experience extreme pain and fatigue like many other “respected” illnesses. People with fibromyalgia deserve the same level of respect that is given to “real” illnesses. We are not lazy. We are not making it up to get off 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’s like to live with fibromyalgia. Please don’t roll your eyes.