Why I Won't Apologize for Having Fun While Chronically Ill (Denise Reich)
I saw a link to this on Facebook, and wanted to share it. You can read the entire article here. The following are some important points.
"Whenever ill people do — well, anything — it’s taken as “proof” that we’re bluffing about our condition. Many of us are confronted by complete strangers on a regular basis when we go out in public, on everything from using parking placards to requesting ADA accommodation at events."
. . .
Social media photos and observations of chronically ill people smiling and looking “normal” or doing errands have even been used to deny or remove disability benefits, which is quite possibly the most troubling thing of all. It’s hard to understand that disability determination specialists, doctors and government benefits administrators — people who supposedly are knowledgeable about a wide range of health conditions — don’t accept the concepts of good days, payback and invisible illnesses that do not always have linear trajectories.
Nobody ever seems to consider what’s happening outside and around that Facebook photo they’re snarking about. The fact that it might have been the first time in weeks that chronically ill patient got to do something really fun eludes them. They don’t realize how much those activities cost in terms of pain, fatigue and reduced function. They look at one photo or one Facebook status about one day and think they’re an expert on your life."
A comment to this article:
"Great article I can so relate to all of it. My symptoms very from bed ridden for a matter of days to having some days in a row where I am in pain but can work through it. I have children, I want to be a part of their lives and don't want them to remember me just as "mom who was in bed sick all the time" I will be strong for them and I will try to do things with them when I can. If you happen to see me on one of those days you are catching me on a non-bedridden ok day. That doesn't mean I am cured, it doesn't mean I am well enough to hold down a regular job, and I do not have to apologize for trying to enjoy my better days."
I have family members and friends with chronic conditions, and I don't think they should be prisoners of their problems.
"Whenever ill people do — well, anything — it’s taken as “proof” that we’re bluffing about our condition. Many of us are confronted by complete strangers on a regular basis when we go out in public, on everything from using parking placards to requesting ADA accommodation at events."
. . .
Social media photos and observations of chronically ill people smiling and looking “normal” or doing errands have even been used to deny or remove disability benefits, which is quite possibly the most troubling thing of all. It’s hard to understand that disability determination specialists, doctors and government benefits administrators — people who supposedly are knowledgeable about a wide range of health conditions — don’t accept the concepts of good days, payback and invisible illnesses that do not always have linear trajectories.
Nobody ever seems to consider what’s happening outside and around that Facebook photo they’re snarking about. The fact that it might have been the first time in weeks that chronically ill patient got to do something really fun eludes them. They don’t realize how much those activities cost in terms of pain, fatigue and reduced function. They look at one photo or one Facebook status about one day and think they’re an expert on your life."
A comment to this article:
"Great article I can so relate to all of it. My symptoms very from bed ridden for a matter of days to having some days in a row where I am in pain but can work through it. I have children, I want to be a part of their lives and don't want them to remember me just as "mom who was in bed sick all the time" I will be strong for them and I will try to do things with them when I can. If you happen to see me on one of those days you are catching me on a non-bedridden ok day. That doesn't mean I am cured, it doesn't mean I am well enough to hold down a regular job, and I do not have to apologize for trying to enjoy my better days."
I have family members and friends with chronic conditions, and I don't think they should be prisoners of their problems.
posted by Shira Salamone at 10:40 PM
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