In “The Slow Death of Compassion for the Chronically Ill,” Ken McKim makes several excellent points, about the lack of compassion towards those with chronic illness. It’s not too long (30 minutes) and definitely worth watching and sharing, especially with those who question your illnesses, or believe that pain meds need to be even more controlled than they currently are.
Video: The Slow Death of Compassion for the Chronically Ill
I haven’t been in the workplace in over 20 years. I was lucky that I was already self-employed at the onset of my chronic illnesses. This has given me so many advantages that I often take for granted.
Because of the way my business was set up I have been able to continue to have an income even during times when I wasn’t actually working. Although, over time, because I was not working as much (if at all), my income dropped drastically, but at least I still had an income. When I felt well enough to work I was able to work on my schedule.
Being self-employed and working from home also kept me from having to deal with how others may “see” my illness, my missed work, how I look physically. Hearing this story of a chronically ill woman being taken into an office by her boss and being told that she needs to “look less sick” because she was making others feel uncomfortable was not just shocking to me, but made me angry for her.
I’ve worried from time to time that perhaps my “over-sharing” on my blog (and then to Facebook, etc) may make some of my friends uncomfortable. But, honestly, these are my “friends” (most in the internet sense, some in the very real sense) so I would hope that they would love me regardless. The idea that some co-worker or something would look at me and think “I wish she’d stop looking so sick, it’s getting on my nerves,” just WOW! It’s one thing to think it. We all have negative thoughts towards people from time to time. But, saying it out loud is another thing entirely. I don’t understand how anyone could feel so entitled.
What hearing this story made me realize is that we need to stop hiding it. We need to stop letting the “norm” of what people see be the super inspirational stories of people overcoming chronic illness, and see that the reality, the norm, is actually that despite our pain we push just to get through each day. That we are fighting every single day and putting in 110% just to get through the day. Sometimes, just getting out of bed is all we can do, and that’s enough. People need to be so bombarded by seeing what our normal looks like that it becomes normal to them. Not to the point that they can ignore it completely, but to the point that they notice, that they realize we are here.
If we take nothing else away from this video, it should be that we need to be more honest about our illness, more open. Stop letting our pride get in the way of allowing our invisible illnesses to be visible. If we need help we need to reach out and take it. We need to stop denying ourselves the things we need out of fear of letting people to see how bad we really feel, or because we don’t want to make others uncomfortable.
[socialpug_tweet tweet=”Stop setting aside your own comfort to make others comfortable. Don’t deny yourself the help you need just because that thing might make someone else uncomfortable.” display_tweet=”Stop setting aside your own comfort to make others comfortable. Don’t deny yourself the help you need just because that thing might make someone else uncomfortable.”]
It’s time for those of us who are chronically ill to start making our illness more real to those around us.
What are your thoughts after watching this video? Have you felt the death of compassion for chronic illness?
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Trisha Pearson says
I will try to find time to watch the video this week. I’m sure you’re right – putting on a brave face and trying to act/look as normal as possible does lead to some doubt by those around us. It’s hard to be real sometimes though, maybe because attention and sympathy are two things I don’t want. I’ll have to examine my reasons for hiding my truth!
Julie says
I think we can find a balance. I’m working on it myself. At the very least we owe it to our friends and family to be real, to be honest about why we aren’t going where ever (“I don’t feel up to it”, instead of “I’m busy”) and about how we feel. It doesn’t mean that the first thing we tell someone upon meeting them is “oh btw, I have Fibro”.