The hardest thing I’ve had to deal with is the judgment and expectation of others. My journey started when I was 17 years old and I was not diagnosed with fibromyalgia until I was 21. Those four years were torture. I had no control over my body. It was as though I was trapped in my own personal hell. I don’t remember much about other people during that time as I was consumed by my pain, loss of cognitive function and sleep deprivation, but I do remember feeling very much alone. The loneliness never really subsides because people can never truly understand something they have not gone through themselves. That lack of understanding is where I believe the unrealistic expectations and judgments come from.
Living with fibromyalgia for almost 10 years has taught me that people get over your illness fairly quick and expect you to as well. Statements such as:
“Why do you sleep so much?”
“You should really get out more.”
“You just need to push yourself.”
“Maybe XYZ is why you are tired all the time.”
“I’m exhausted, too. You just need to push through it.”
“You are so lazy.”
“You need to do XYZ.”
These statements may seem acceptable on the surface, but when they are repeated over and over again it becomes tiresome, especially when paired with these responses:
“I don’t know, I am always exhausted and it hurts more when I don’t sleep.”
“Going out gives me anxiety and requires a lot of energy. I’d rather just relax and stay healthy.”
“Pushing myself is the exact opposite of what I should do. If I push myself then I either get a flare-up or make one worse.”
“The reason I’m tired is because I have fibromyalgia. I don’t sleep properly and start out with less energy than a healthy person.”
“Maybe you should relax and get some rest if you are exhausted. I have fatigue which means my exhaustion never goes away, I am just less exhausted at certain points.”
The “you are so lazy” comment really doesn’t have a comeback that doesn’t result in anger. Why? That’s because we may already think we are lazy and weak. We may wonder if we weren’t so weak or lazy would we be able to do what is expected of us?
You are not lazy. You are not weak. Living with a chronic illness is not a simple feat. Not letting the chronic illness consume you is a monumental achievement. Every single one of us has almost felt defeated, but we find that inner strength to pick ourselves back up and find a way every single day.