This column article written in January, 2001.
A lot of the time, I have a hard time believing I'm really sick.
Most people will find this hard to believe - especially coming from me. I mean, I'm an invisible disabilities advocate! I write extensively about IDs, my work has been published in Australia, the USA, Germany and South Africa, and other places. I run Internet support groups for people with CFS, Fibromyalgia, and other invisible conditions. I fight for other people's rights and yell a lot when people are trampled on ...
But the truth is, deep down I'm terrified that some Big Scary Person is about to walk up to me and scream at me that I've been lying and exaggerating and making it up and there's nothing really wrong with me and I should get out of bed and go to work or school like a Normal Person and stop making a fuss.
Who's to blame? I don't know. Partly a society that trivializes and ignores invisible disabilities. Partly my own ingrained distrust in myself. Partly others' distrust of me - for example earlier in the course of my illnesses I received the results of some urine tests. The test results were full of abnormalities, and my Mother helpfully suggested it was probably because I spent so much time in bed. Maybe she was just trying to make me feel better. She probably doesn't even remember the event, but that moment of disbelief has been etched into my brain.
I thank that it doesn't matter who to BLAME though, it matters who can SOLVE the problem.
Others can help, sure, but ultimately only I can solve it for me, and only you can solve it for you. And what can you do? I thought of a few things -
If there's somebody or something around that's sucking away your belief in yourself, get away from them. If you can't physically remove yourself from the situation, you might want to visualize an energy shield around you, visualize their harsh words bouncing off the shield and never getting to you.
Take a look at what you are saying to yourself - self-talk is important. When greeted with skepticism or doubt that your disabilities are real and serious, are you able to defend yourself, or do you curl into an upset ball and inward terror that they might be right? Tell yourself frequently the truth - that you are not exaggerating or making up your disabilities, that they are just as real and serious as anything visible.
If your disbelief in yourself is much ingrained, you may even want to write out these positive sayings on cards or posters and put them somewhere you will read frequently. Use these positive messages as an antidote to all the negative messages society sends about invisible disabilities. I have used this method with sayings such as:
- What I feel is real
- I am not faking
- I can trust my feelings
- This is real and serious
- I am not exaggerating
- Only I know what I feel
Nobody knows you as well as you know yourself - believe in yourself. Oh, and don't let the turkeys get you down!
