“You could be doing more.”
“Is the pain really THAT bad? I’m sure you could get out of bed if you really tried.”
“Why aren’t you going to that party/dinner/event? Everyone thinks you’re lazy and antisocial.”
“Do you really need to stay home from work? You’re being lazy. Force yourself to go in.”
“Do you really need to go to the hospital? It’s not that bad - just push through.”
“See? The ER doctor didn’t even help you. It was stupid of you to go in. There’s nothing wrong. Just try harder.”
This used to be my harmful inner monologue.
I’m sure all of us with chronic illness have said similar things to ourselves.
It’s incredibly hard to adapt to becoming disabled - and we often gaslight ourselves and push our bodies to their breaking point.
We run from reality.
It’s understandable - no one WANTS to be chronically ill. We didn’t grow up hoping to spend our lives stuck in bed dealing with unrelenting pain & fatigue.
Chronic illness can and does strike out of nowhere - catching you off guard and forever altering the course of your life.
Of course that’s a difficult thing to accept.
Often we have doctors, friends and family downplaying our situation - telling us to “just try harder” or that “other people have it worse”.
Who in the chronic illness community hasn’t heard “have you tried yoga?” Or “just be glad you don’t have X condition”?
The reality is people have a difficult time facing chronic illness. This doesn’t just apply to patients. Those who love us can struggle to accept it as well.
Watching someone lose their health is hard. Knowing there’s no hope of improvement? It scares people.
We understand acute illness. You get sick or injured, you rest and then you get better. Things go “back to normal”.
We also understand terminal illness. We are able to process a condition that will gradually get worse and then take your life. /6
Where we struggle is with chronic illness. Existing in the grey. People HATE the grey.
They find it hard to imagine that you could become sick with something that will completely ruin your quality of life - but won’t kill you.
They can’t imagine that the suffering could continue for months, years and even decades.
So they deny it. They minimize it. They tell us to try harder, think positive & play through the pain.
We internalize those messages - and before you know it - you’re doubting yourself.
I did this for years. Constantly telling myself it wasn’t really “that bad”. I just needed to try harder, exercise more, avoid the hospital, think positive etc etc.
It didn’t work. You can’t “try harder” your way out of chronic illness. It doesn’t work that way.
Society is already so cruel to people with disabilities - we don’t need to be cruel to ourselves.
It took me a long time to realize this. To let go of the blame and accept that I WAS severely ill. It wasn’t my fault, I hadn’t done anything wrong.
It was time to put the “coulds” and the “shoulds” to bed and find a way to move into a place of kindness and acceptance.
It was time to stop running from my illnesses. To stop trying to figure out every single flare. To stop putting myself down.
It didn’t come easy. In fact I still struggle every day.
But I’m putting in the effort. The amazing thing is the more effort I put into letting go - the happier I am.
Instead of wasting energy on blame - I’m finding ways to adapt & accommodate my diseases.
I’m managing to carve out moments of peace and calm - which when you’re chronically ill can be incredible rare.
Our bodies are unreliable - constantly throwing us curve balls, flares and setbacks.
We NEED the calm wherever we can find it.
Which brings me to my third and final article in my series on living with MCAS - Learning to Let Go.
I hope this article helps other people find their own path to acceptance, accommodation and peace:
https://www.disabledginger.com/p/learning-to-let-go-how-to-accept
