… from you, as a friend or relative? Or, more exactly, what kinds of often well meaning things do you say or do for someone with chronic illness that are actually hurting and not helping?
I have a good friend who, like many other friends actually, has a chronic illness that is sometimes painful, sometimes scary, sometimes annoying, and at any given time, I think, is one or more of those things, and she has written a blog post listing over a dozen things that people often do or say that she wishes they wouldn’t. Most of these are really simple things, often unintentional, but not without consequence. Some of these, I think, are things people do because they are talking to themselves or about themselves rather than to the person their mouth is pointed at while exuding noise (which is what most humans do most of the time anyway). Or, they are extolling a belief or two that they need everyone else to hear even if it is irrelevant at best, likely very wrong, and just plain harmful in some cases.
Now, as soon as I read this post by my friend I immediately emailed her and said “I’M SO SORRY I DID ALL THOSE THINGS, HOLY CRAP, SORRY” but it turns out that that I was cool. But, honestly, it is easy to see how some items on her list would be so easy to do by accident (and one would naturally be forgiven), which is why you need to read this post. Even if you think you are doing this right, you may well be accidentally doing it wrong.
Have a look at Let’s Talk About Chronic Illnesses! by Sarah Moglia.
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That one about the drugs hits home with me. So what if I get addicted to the one and only drug that makes life liveable. I found one once (it was non-addictive anyway)…. and then developed an allergy to the wonderful thing. I was grateful for the 18 months I got out of it, but I really, really regret not having it any more.
But if I could still take it, _and_ even if it was addictive, I’d go on with it regardless. Living a reasonable life would be worth it. Spending half your life in bed and/or worrying about whether you have enough ‘spoons’ to get you through the next few hours is seriously tedious. Even if your condition is more lifestyle threatening than life threatening. It’s not much of a life some days.
The most important don’t make a panic. Yes then people are illness so it isn’t and in any case our close people should have help from us – friends. But that speak about other sources for example Internet. Of course then there are a lot of new medicine sites we must understand their questions of useful for people. Then we have only general information: where, what and etc, it is normal – for example about site http://www.catalog.md . But then speak about different recommendation on other sites, so to be careful!
Great article, thanks for sharing. I don’t actually have any close friends who have this sort of chronic illness, but if it happens, I feel better equipped to respond in a way that’s appreciated.
In a related matter, Crohn’s disease sounds pretty awful.