5 lessons Learned From Fibromyalgia
Lesson 1: Believe Sexism Is Why We Do Not Have Cure For Fibromyalgia.
Sexism is alive and well in medicine, and believe it is the primary reason why fibromyalgia science is at least 30 years behind where it should be. Fibromyalgia research has lagged far behind other diseases, bogged down by controversy and a century of arguments about whether it was a “real” illness. People who have fibromyalgia are mostly female and the illness has suffered from a gender bias that has hampered it being taken seriously by medicine. If this illness primarily affected males, think we would have a cure by now, or at the very least a well-funded governmental institute dedicated to finding a cure!
Lesson 2: Having Invisible Illness Is A Double-whammy.
Sufferers show no outward signs of the disease and standard blood testing is normal. Having an invisible illness – one in which you look fine – is a double-whammy, because not only do you have to try to manage your symptoms and grieve the loss of your health, you also have to fight against doctors, employers and even family members that may not believe you or understand your struggle.
Sometimes fibromyalgia feels like carrying a 200-pound invisible backpack. If others could see the backpack of fatigue and pain we carry, they would better understand our limitations. And your employer may be more forgiving when you need accommodations: “Wow, of course you need an ergonomic chair, you have a 200-lb backpack weighing you down!” But truthfully, employers, family and doctors don’t always understand or see the burden, which just makes the burden heavier.
Lesson 3: Pain Is Subjective Experience Cannot Be Truly Understood By Another.
Everyone experiences physical pain, and doctors as humans have usually experienced the typical pain that is described to them by their patients. Bad sunburn pain, check. Ankle sprain, been there. Sore throat, yep, had one last month myself. Doctors have a personal vocabulary to understand those types of pain.
But come into the office trying to describe a deep, aching, burning muscle pain that is migrating throughout your body, and you will get blank stares. I still remember the you-are-a-crazy-person look a doctor gave me when I tried to explain that it felt like my neck was tired of holding up my head.
Lesson 4: Most Doctors Still Do Not Know Much About Fibromyalgia
Our understanding and ability to treat fibromyalgia has made huge progress. Yet most of this information has not filtered down to the actual doctors providing care. The majority of care falls to busy and overwhelmed primary care providers who don’t have time to go searching for new treatment ideas among the sea of medical publications.
Lesson 5: Fibromyalgia Is Not Caused By Depression, But
Can Cause Depression.
Several of doctors suggested my symptoms were caused by depression. But they were wrong. Was indeed depressed, but only because life was falling apart, doctors could offer no help and was exhausted and hurt all over. Anyone dealing with that would be depressed!
Know that pain can actually cause changes to the brain that activate the areas associated with depression. So while depression does not cause fibromyalgia, fibromyalgia most certainly can cause depression!