When we go to the doctor, we are looking to them for advice, for help and to offer solutions to medical problems that we don’t have the knowledge to solve ourselves. But when you have an illness like ME/CFS and/or Fibromyalgia, the reality is the patient is usually more knowledgable than the trained medical professional and we end up giving them the education before turning over our hard-earned co-pays.
We usually sit through our doctor’s appointments that are full of nonsense and jibberish on illnesses that the doctor has no clue how we are surviving with daily, but then they expect us to just “push through”. Last week I had one such appointment with my neurologist.
I have always liked my neurologist so I was really disappointed when he started in on the same old tired spiel all of us patients have heard before. I normally see him every 3 months for my BET (Benign Essential Tremor) and chronic headaches. When he saw me, he was thrilled with the amount of weight that I had lost. He wanted to know how I was losing the weight, how I was feeling, and if I was doing any exercising. I told him about my diet and that I attempted to do light workouts about twice a week as long as my ME/CFS & Fibromyalgia symptoms weren’t flaring too bad.
He told me that I needed to “push through those symptoms” and “exercise anyway”. Of course, I started to explain to him how exercise can make symptoms worse and if you are already flaring, it is extremely harmful. He didn’t want to hear it. He insisted that I just needed to continue to “push through it”. I told him, “BUT I CAN’T WHEN I’M FLARING. IT’S THAT BAD. MY BODY WILL NOT ALLOW ME TO DO ANYTHING. I CAN’T EVEN DO ANYTHING AT HOME LET ALONE GET TO THE GYM AND DO ANYTHING.”
It’s the same old song and dance we’ve been doing for years and it will never change. Doctors assume that the fatigue of ME/CFS is like that of regular fatigue and no matter how you try to explain to them the difference, they still don’t get it. The only way they will ever get it is if they live with us or move us all in together for a study and live together for an extended period of time and the doctors live with us.
I feel like it doesn’t seem to matter what I do, it’s not good enough. I lose the weight, I exercise the best my body allows me to, and they still complain that what I do isn’t enough. It has to be enough because it is all I can do.