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.
When you get told over and over again that you need to do something, “I can’t” just doesn’t seem to cut it after a while. What the “healthy” people don’t seem to understand is that I don’t not want to do things. I fear not being able to do them and becoming a failure. I fear being able to do them because I have pushed myself too hard, which results in more pain. I know my limits but people test them over and over again, and that disappointment is what drives me to push ourselves farther than we should.
This is in no way meant to bash the “healthy” people, because it is hard to understand chronic illness even if you are living in it. It just weighs heavily on my thoughts that I am constantly disappointing those around me no matter how hard I try.
To people that are living with a chronic illness: It’s OK. You don’t have to meet everyone’s expectations. You should set your own expectations for yourself, because only you know your limits and what you are capable of. There are people who will always judge you, and that is a reflection of who they are as a person, not you. I believe that since we have become ill, we may struggle to get back to the person we once were and that includes our relationships. We have to face the fact that we are no longer the same person. We have grown into someone much stronger. If we have changed, how could we expect the relationships to stay the same? It’s OK — I believe every person has been put into your life for a reason. Some people don’t always stay, and that’s part of life.
Cherish the memories you have and know that every experience that you face helps define you as a person. The chronic illness has changed you, but it is not the only thing that defines you.