What happens when you have an illness that society and doctors know nothing about?
I have been sick for a very long time. I started doing physical therapy around the age of 11, had an IBS diagnosis at 14, and started losing my ability to walk at 17. At 19 I had my lower spine fused together, and although I was able to walk, the trauma of the major surgery activated my fibromyalgia. Not even 2 years later, the H1N1 vaccine triggered ME/CFS.
ME/CFS. Those 5 letters took 47 physicians and 8 years to get me an official diagnosis. Eight years of doctor after doctor, test after test, wondering what was wrong with me. How is it possible in 2017 for this to still happen? How were my skin cancer and brain tumor easier to diagnose and treat than something called Chronic Fatigue Syndrome? During those years, unguided and stubborn, I thought I could control this illness. I thought wrong.
This denial meant that I built my life around performing only the best parts of myself for other people. Scared to show what it really looked like when I crash. Normalizing the episodes of full body paralysis that were occurring daily. The only exception to this is my husband; he’s had a first row seat to this shit show since day 1. But it’s time to quit that shit. The painful self-care I am doing now is coming to terms with the fact that I am sick. Very sick. It’s time to make drastic changes to my life.
No more pretending. Years of putting on a healthy front have progressed my illness to being homebound, spending 90% of my day in bed. Every decision has to be weighed (should I shower today, or do a load of laundry?), and everything comes at a price. For years I had only been factoring in the short-term cost, unaware of the long-term damage. Now I’m trying to course-correct. I am taking a leave of absence from my full-time employment. I handed off all physical aspects of my LuLaRoe business to my sister. We hired help to clean the house, pick up the kids, make dinner, and put them to bed. Yes, putting true self-care first means I can no longer care for my own children.
So why keep up the false pretense for so long? I am clearly “type A.” I used to be a competitive gymnast. I am accomplishment driven. I have never let anything stand in my way. Well, Chronic Fatigue Syndrome comes with terrible stigma; its sufferers are widely viewed as lazy, deconditioned hypochondriacs. From May 12th (International ME/CFS Awareness Day) being made fun of on Last Week Tonight with John Oliver, to a recent UC Berkley student article which suggested Chronic Fatigue Syndrome as a jokey excuse to get out of finals. How would you feel if MS was used as an excuse not to walk to class? Or if Alzheimer’s was used as an excuse for being forgetful? Fear of this stigma is why I have chosen, again and again, to play the part of a healthy individual. I am now understanding first hand how much damage this has caused.
Very few specialists exist, since ME/CFS is only covered in ~1/3 of medical schools. There is no cure. There isn’t a tried and true treatment plan. There isn’t a single on-label medication cleared by the FDA. The stigma is felt just as strongly in medical environments too; “You’re too young to be this sick,” “There’s no way you can have this many illnesses,” and “Please don’t come back, I can’t help you” are a sampling of things I’ve been told by doctors. This is harmful. I will readily admit that I do not write this illness on medical history forms when at the ER or seeing new doctors in fear of being dismissed. I spent 4 years completely unaware I had this illness, then waited another 4 years to become a patient of Dr. Klimas, one of the few ME/CFS experts. Access to proper medical care is a huge barrier for ME/CFS sufferers.
This is a plea to help me and everyone else with this crippling disease. Spread the word. Share this knowledge. Help educate everyone, from friends to medical professionals. I have linked many different sources below. Please take a look and share: help those who are too sick to speak up and advocate for themselves!