That people couldn’t comprehend that a person could look perfectly well on the outside while going through a raging storm of pain, incredible exhaustion and other symptoms baffled me. The lack of comprehension wouldn’t have been so bad if it wasn’t often followed with judgements and suggestions of how I could shake off my pain with positive thinking, meditation and the host of never-ending recommendations.
I was still coming to terms with my diagnosis, learning how to navigate life with a chronic pain condition and this was complicated by the need I felt to validate my suffering to others who didn’t seem to believe (doctors included). Looking back I wish I had been firmer, braver and bolder. Here are some of the things I wished I had said.
Just because you cannot see my pain, that doesn’t make it a figment of my imagination, or a product of negative thinking. Many conditions that afflict people nowadays are invisible, showing few outwardly signs of something wrong. Invisible pain is real too.
Just because I look well on the outside, doesn’t mean that everything is fine on the inside. Just because I smile through my pain, my debilitating exhaustion, migraines, cognitive impairments, multiple chemical sensitivity etcetera doesn’t mean I’m not reeling internally.
If you don’t understand how it is a condition like fibromyalgia can cause so much havoc in a person’s life, all while we look well on the outside, that’s fine. Totally fine, but you should note that your mere incomprehension doesn’t render facts falsehoods, or truths, lies. You don’t have to understand to support someone else who is hurting. How can you come to understand if you’re not even willing to listen? At least try to listen.
I know that not many people know about fibromyalgia or understand how it causes increased sensitivity to pain. So I get the disbelief over my saying ‘ouch’ when I was poked. Fibromyalgia appears a condition of contradictions. It’s like all the stuff we know about our bodies, well, scratch that, if you have fms, the rules change. What works for a healthy person doesn’t always work for an fms patient. So yes being poked hurts. Tickles hurt. Sometimes I hurt myself when trying to relieve an itch on my back for instance.
And I really was very unwell when I couldn’t make it to your parties, even if I looked ‘well’ as you say.
I know some of this sounds very odd, but that is just what we live with. You might not know but that’s why I try to explain. Still I faced persistent talks about how going to the gym would be sure to help, when in fact the kind of exercise you insisted on left me flattened in bed for days wincing from pain; I was pushed to walk/jog at a time when taking a few steps was so agonizingly painful my doctor lined me up for steroid injections (yes under the sole of my feet – I’m getting the chills from just thinking about it).
I was wrong to spend my time trying to validate my pain to you, to try to make you believe, make you see how I’ve been suffering. Because the time I spent doing that, was time that I could have spent trying to work on managing my symptoms.
The point is, by judging (and misjudging) people in pain, you are actually making life harder for us. You are creating more hurdles that get in the way of people accessing the help they need. Living with an invisible disability is tough as it is.
Stubborn people who choose to be critical of other people’s pain and suffering often remain so, until the shoe is on the other foot. Unbelievers often see the light when they are suddenly faced with similar circumstances, only to discover that ears, hearts and minds close off to them too. Kind of like poetic justice, but I’ll just leave that right there. I think you get the point.
Never judge someone else for what you don’t understand or believe. You never know when you will end up in a situation that lands you right at the centre of other people’s judgements.
P.S unless you are willing to listen and try to understand, you have no right to criticise me for the meds I am willing to take in order to have some quality of life.
Gentle Hugs x