We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; the latest comes from health writerMarijke Vroomen.
I can’t imagine anyone relishing the idea of being tired, in pain, or suffering from “brain fog” for one day, let alone for months or years. If you have fibromyalgia, this is what you experience on a regular basis. Yet there are people who believe that fibromyalgia doesn’t exist – that it’s a made-up disease with the purpose of appeasing patients, giving their complaints a name.
Incidences of muscle pains characteristic of modern-day fibromyalgia have been documented for centuries, but only in the 1970s did the disease begin receiving serious attention as physicians began to better identify trigger points, inflammation, and fibromyalgia-associated issues such as sleep disorders and irritable bowel. And only in 1987 did the American Medical Association recognize fibromyalgia as “an emerging condition.” But saying it’s a disease and convincing non-believers are two different things.
I’ve been asked what it’s like to have fibromyalgia and, just as it’s difficult to diagnose, it’s difficult to explain. Although I was only diagnosed a few years ago, I can trace the symptoms to my teens. I often experienced unexplained bouts of exhaustion and pain. I never slept well. I had other fibromyalgia-related physical issues, but no one could figure out what was wrong. After a while, I began to believe that it was all in my head. I knew I felt the pain, but there was no explanation. I knew I was exhausted, but everyone is tired – why would I be any different? The other symptoms? I was overplaying them, complaining too much, imagining them, looking for attention, wasn’t I?
My family and close friends were (and still are) wonderful. They never made me believe that I shouldn’t be feeling what I was experiencing. They tolerated my quirks, such as the hypersensitivity that results in a very strong startle reflex and not being able to stand the feel of certain things against my skin. (It wouldn’t surprise me if the princess in fairy tale The Princess and the Pea had fibromyalgia!) My husband, my children, my friends, all helped me when the pain was bad and the exhaustion overwhelming. But feeling so different and not knowing why take a toll on a person.
I did what many with fibromyalgia do. I withdrew into myself. By withdrawing, you minimize your chances of being criticized or attacked by those who don’t understand your “nonexistent” illness. But at the same time, because you are internalizing everything, your symptoms become worse. Your mind plays more games. And the cycle continues.
I cried when my rheumatologist told me I had fibromyalgia. I told him I wasn’t crying because I had it, I was crying because I finally had validation – that this was real. My pain was real. My illness was real. He told me that many patients react the same way. How sad.
A year ago, I began a project called 101 Questions About Fibromyalgia. I asked friends and colleagues for questions, either from the point of view of having fibromyalgia or loving someone who does. I received some great questions but I also received a long e-mail from an editor whom I had never met. Her angry e-mail outlined exactly why fibromyalgia doesn’t exist, point for point, but she also told me that if having a name for my illness made me feel better about myself, then it was OK with her.
This is why many people with fibromyalgia don’t speak out. There is no such anger against people who say they have diabetes or cancer or Crohn’s disease – but it’s acceptable to brush off, deny, or criticize a claim that you have fibromyalgia.
Living with any invisible illness can be difficult. Living with one that still is not accepted by many is so much harder.