By Wendy Burnett
When you have a chronic invisible illness, one of the hardest things to deal with is the lack of understanding from your family, friends, and co-workers. “Normals” (those without chronic illnesses) have only had illnesses that last a few days or weeks, then go away; so when they see you on a “good” day, they think you’re “getting better.”
If your friends see you out shopping one day, and then the next day when they ask you to go to lunch, or help with something; and you can’t because the shopping wore you out, they get angry or think you’re “faking.” After all, you were fine yesterday. They saw you at the mall, and you looked just fine, so why can’t you help them with yard work today?
You need to know that there are some people who will never “get it” no matter what you do, or how you try to explain.
Some of them just refuse to believe that you’re sick because it makes their lives harder if they admit it. (My ex was one of those. He couldn’t admit I was really sick, because that would mean that he had to help me with things he didn’t want to do, and would have to stop demanding that I do all the things he wanted.)
Others just have some sort of mental block that prevents the information from penetrating, or stops them from being able to understand it even if they intellectually know the facts.
There are even a few who know, understand, and just don’t give a shit. They won’t allow your illness to impact their lives, no matter how sick it makes you to fulfill their demands. Not only do they not care about how their demands affect you, they actually get angry when they’ve demanded more than you can give and you wind up so sick you have to go to bed (or end up in the hospital.) Once you’ve figured out that someone is in this group, the only thing you can do to take care of yourself is eliminate them from your life.
For everyone else, here are three excellent letters that can help explain why your fibromyalgia, or your ME (CFS), or chronic pain condition are so confusing:
A Letter to Normals from a Person With Chronic Pain
(by Bek Oberin)
A great explanation of what it’s like to live with chronic pain, and how unpredictable life can be. Although it specifically focuses on pain; it’s relevant to fibromyalgia, ME (CFS), MS, and the full range of other chronic conditions.
My Fibro (by Aurora T)
An excellent description of what fibromyalgia can do to someone that has it. Although it specifically focuses on fibro, many of these symptoms and issues are common across the full spectrum of chronic, disabling conditions.
The Spoon Theory (by Christine Miserando)
Christine has lupus, and has developed an amazingly creative and accurate way of explaining the crushing exhaustion that goes along with lupus, fibromyalgia, ME (CFS) and so many other chronic illnesses. This is the best known of the three, and an awesome resource for all of us.
Bonus: Good days, bad days, and invisibility (by CinderBridge)
Written by Susan Wenger, and recorded and posted for National Invisible Chronic Illness Awareness Week, this song expresses what it’s like to live with what Susan calls a “good day/bad day” disease. As she says in the song,
“You only see my on my good days
How are you to know”
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- How to Deal with Stigma or Bias against Chronic Illness (msmeans.wordpress.com)