I usually do not tell people that I have fibromyalgia because this admission is usually accompanied by the eye turning. Fibromyalgia is a unique disease in which many people, including doctors, believe that we are inventing it. In your mind, fibromyalgia does not exist. Everything is in our heads. We need advice, or we are looking for drugs.
People who live with fibromyalgia are often treated as depressed vagus looking for opiates. A conversation with a new doctor can be 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 do not like to deal with fibro because there is no cure, and no real treatment. It is difficult for them to find out if their back pain is something for which a test is performed, or is it simply “fibromyalgia”. Are you having a heart attack or is it “just fibromyalgia?” Do your joints hurt because you have a disease or is it just fibromyalgia? The new symptoms are often dismissed and not treated because it is only fibromyalgia.
Patients with fibro experience many of the same symptomss of other diseases. Our sensory nervous system has gone mad. 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. The simple fact of wearing clothes can cause unbearable pain. Some people do not believe this is possible, so they turn us around. When bright lights, loud noises or crowds are so irritating to our nervous system that we need to go home, or we refuse an invitation to leave, we have that blank eye. We may feel like going out, but after showering and getting dressed, sometimes there is no energy to get out of the house. Our social life consists of visits to the doctor and trips to the pharmacy.
Cognitive function and memory are affected. We can not find the right words for things. Recently I told my husband that the dog needed to be toasted, not frozen! I wanted to say arranged. Trying to keep an intelligent conversation can be a difficult task. The words you tell us can also be mixed. Your words may sound like abstract babblings that have no meaning. If we do not respond immediately, we are not ignoring you, we are trying to discover what you are saying! We can ask the same question again and again because we can not remember the answer. We can stop talking completely until our scrambled brain restarts.
Our digestive systems are often out of control. Frequent and unexpected diarrhea is a problem, as well as a horrible constipation that lasts for weeks. People who live 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 large number of other symptoms with which we live, 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 exhausted. We often have to give up our careers, our social life and time with our families. We worry about how to endure 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 can not work. Friends and spouses sometimes leave because they can not handle our disease. Often we can not 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” diseases. People with fibromyalgia deserve the same level of respect that is given to “real” diseases. We are not lazy. We are not inventing it to get out of work. We are not looking for drugs. We are not crazy”. We do not deserve to be stigmatized by society because they can not understand what it is like to live with fibromyalgia. Please, do not roll your eyes.