I don’t usually tell people I have fibromyalgia because this admission is usually accompanied by the eye roll. Fibromyalgia is a unique illness in that many people, including physicians, think we’re making it up. In their mind, fibromyalgia doesn’t exist. It’s all in our heads. We need to get counseling, or we’re looking for drugs.
People living with fibromyalgia are often treated like depressed slackers looking for opiates. A conversation with a new physician can go like this:
Doctor: “What brings you to the office today?”
Patient: “I’m hoping 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 either. It’s difficult for them to figure out if your back pain is something there’s a test for, or is it “just fibromyalgia?” Are you having a heart attack or is it “just fibromyalgia?” Do your joints ache because you have a “real” illness, or is it “just fibromyalgia?” New symptoms often get dismissed and go untreated because it’s “just fibromyalgia.”
Patients with fibro experience many of the same symptoms of other illnesses. Our sensory nervous system has gone haywire. We experience extreme, debilitating pain and fatigue all the time, every day. Everything hurts from the top of our scalp to the bottoms of our feet. Simply wearing clothes can cause excruciating pain. Some people don’t believe this is possible, so they give us the eye roll. When bright lights, loud noises, or crowds are so irritating to our nervous system that we need to go home, or we turn down an invitation to go out, we get that eye roll. We might feel like going out, but after taking a shower and getting dressed, sometimes there is no energy left to actually leave the house. Our social lives consist of doctor visits and trips to the pharmacy.
Cognitive function and memory are affected. We can’t find the right words for things. Recently I told my husband that the dog needed to be toasted – no frozen! I meant to say groomed. Trying to hold an intelligent conversation can be quite a chore. Words you say to us can get jumbled up as well. Your words can sound like abstract babbling that makes no sense. If we don’t answer you right away, we’re not ignoring you, we’re trying to figure out what you’re saying! We may ask you the same question over and over again because we can’t remember the answer. We may stop talking altogether until our jumbled brain reboots itself.
Our digestive systems are often out of control. Frequent, 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 is going to break.
A fibro warrior’s anxiety and depression can be extremely difficult. Along with the myriad of other symptoms we live with, we also deal with the social stigma of mental illness – eye roll again. Mental illness is a physical illness.
Living with these symptoms for decades leaves us physically and emotionally exhausted. We often need to give up our careers, our social lives, and time with our families. We worry about how we will put up with 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’t work. Friends and spouses sometimes leave because they can’t handle our illness. We often can’t leave the house for days or weeks at a time. We are bored and lonely.
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 given to the “real” illnesses. We are not lazy. We are not making it up to get out of work. We are not drug seeking. We are not “crazy.” We deserve not to be stigmatized by society because they can’t understand what it’s like to live with fibromyalgia. Please don’t roll your eyes.