Coping, Society


At a recent party, Jenni of ChronicBabe had the unfortunate experience of meeting a woman who couldn’t comprehend the complexities and frustrations of chronic illness. The article title sums it up well: “To teach? To shush? To punch? What do you do when confronted with a naysayer?

Here’s an excerpt from the frustrating conversation:

“‘Really,’ [the naysayer] said. ‘Do you know anyone who has Crohn’s or colitis? I don’t know how people live like that. Their days are just ruled by their health. I don’t see the point.’

‘Urm, what do you mean? The point of living? The point of my web site?’ I asked.

‘I just don’t know how they exist,’ she replied. ‘I know this one woman with migraines and she just complains all the time and takes naps every day. She just needs to stop talking about it and go see someone to get rid of it. Come on. And those people with fibromyalgia, I guess it can be intense for short periods, but really.'”

How could someone be so insensitive? Sure, the woman didn’t know that she was insulting Jenni personally, but how could she not see the point of trying to live well with chronic illness? I’m angry, but I can’t really fault her. Unless you live it, you just can’t know what it’s like.

I’m proud of Jenni. Even if the naysayer didn’t get it, perhaps she caught a glimpse of the impact of chronic illness on women’s lives. As annoying as it is, part of helping people who have chronic illness is teaching non-chronics that we’re not just lazy complainers.

Deciding what and how much to disclose is a frequent struggle. It may be a comfort to know that when you do tell others about your life with illness, you are helping them understand a little bit about every other chronic that they know.

I’m also proud of Jenni for recognizing a losing battle and walking away. You can only try to teach so  much and a giving glimpse is better than letting ignorance fester.

1 thought on “Insensitivity”

  1. Wow, that is just crazy. Does that women really feel like we WANT to live this way, like we somehow ENJOY the pain?

    I totally agree with the struggle of how much to disclose. Not enough, and people will think that there is nothing wrong. Too much, and they think you are whinning and exagerating. It’s really hard to find a balance.

    Since my migraines and chronic daily headaches have gotten better, I struggle with talking to people. Saying “I had CDH with Migraines” seams like a lie, because I do still get migraines and headaches, just not as much, or as intense. However, saying “I have chronic daily headache with migraine” makes it sound like I’m still in the trenches dealing with them everyday.

    Ok, sorry to take up so much comment space, but I just realize that, just because I don’t suffer in pain everyday, I still deal with them everyday, meaning I watch what I eat, get lots of sleep, and get massages every week. So maybe I should start saying, “I manage my headaches”?

    Thank you for this post, it really got me thinking.

    I think it’s just a sheer lack of understanding, as evidenced by this excerpt: “She expressed her belief that people with chronic illness should never complain, least of all in the workplace. ‘So what,’ she said. ‘That’s their problem – come to work, and do your job. Don’t make it my problem.'”

    The disclosure thing is tough. Even though you have less pain than you once did, you still have CDH and migraine. Technically, CDH is 15+ headache days a month, not that that translates well into conversation. I have no suggestions to make it easier!


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