Humans of ME/CFS
My story started in 1990 at the age of 18. I can remember the exact circumstances that paved the way for a life-long journey through illness and fatigue. I developed an infection resulting in emergency surgery to remove an abscess from my tonsil. I never fully recovered. Over the last 26 years, I have seen every kind of doctor and tried every kind of treatment in a quest to feel better. The most difficult part for me is how invisible my illness is to even those closest to me. I am ashamed for having been ill for so long. I rarely talk about my ME/CFS with anyone.
I am now being seen at an ME/CFS Clinic. I vividly remember my very first appointment there. I was happy that I made it through the entire appointment without crying but teared up when asked me about my daily activity level. They wanted to make sure that I was not overdoing it because the inevitable crash would come and it is harder for the body to recover when we continue to allow our bodies to crash. I explained that I learned long ago not to overdo and tried hard not to push myself too far. She said that was great and then looked right at me and said, “But there are probably a lot of things you want to do that you don’t do because of your fatigue, right?”
In that moment, emotions of tremendous loss flooded to the surface. It was if she could actually see me lying on the couch as my babies crawled on the floor in front of me because I was too tired to sit up and play with them. Or see me sitting at the park on a bench instead of running and playing with my toddlers. Or see me running home at lunch to take a quick nap instead of lunching with friends. Or see me spending a day in bed because I played on the beach with my kids the day before. Or see me telling friends how much I hate exercise instead of admitting that it’s too exhausting to participate. Or see the anxiety I feel when I see a busy weekend on my calendar or late nights or early mornings ahead of me and panic because I’m not sure I’ll be able to handle it. Or see my irritability because it is hard to be happy and pleasant when you are constantly tired and hurting. Or see my frustration with people when they say, “I’m tired, too,” knowing that they truly have no understanding of the bone-crunching tired I feel on a regular basis. It was in that split second that a wave of emotion came over me and all I could do was nod my head “yes.” In that moment, I knew that she saw me. Not the person that I pretend to be, nor the person that I want to be, but the real me. The very, very, tired me.