After a person with chronic illness (PWC)shares their life story with someone, several things can happen (as can innumerable other responses and combinations)...
1) They get quiet and uncomfortable. 2) They ask or say unintentionally stupid & hurtful things before thinking. 3) They LISTEN & take time to process but eventually come back.4) They ask good questions, and support you, and might even draw inspiration from you. 5) They stay quiet at nod, but as soon as you part ways they take off running like their hair is on fire...
the most difficult & heartbreaking response of all (at least personally) is when someone is cool with it, supportive, etc, but then suddenly decide that they can't handle it after a period of time. This isn't something a person can get away from (at least not the person that lives with it)
Don't say you're sorry, there's no need. We know you're sorry you just found out that someone you care about lives with incurable chronic illness...if you weren't sorry, you'd be glad, and if you're glad that someone you care for deals with this, youre just weird. And if that's the case they should be the one running like their hair is on fire, not you.
Acceptable & welcomed responses and questions...
- how do you feel about living with it?
- What helps?
- What doesn't?
- Is there anything I need to know? Something I could read?
- How does it impact your life? -How does/could it impact "us"?
-Say that sucks, because it does.
-How do you manage to live well, even though you can't really "get well"?
DON'T say/do any of the following... or we might look at you funny and/or pull out your tongue and beat you with it, since its the organ that delivered hurtful or insensitive words....
-"You don't look sick" (really dipshit? I don't look sick, I look like Catherine, Joe, Sarah, etc...at least I did). Would you rather a person be pale, drawn, and incapable of holding it together? Would that make you more accepting of what they go through?
-"Why can't you just get over it?"
-"You should pull yourself up by the bootstraps" ...Please, let us demonstrate what YOU can do with those bootstraps.
-Don't offer me health advice;
...Im glad the accupuncture, crazy diet and breathing exercises worked wonders for your cousins boyfriends sister, but I'm quite certain they aren't living with the same chronic combo as _________. Chances are, if its a legitimate treatment option, its been tried, or will be suggested by a DOCTOR. If I want your advice on MY health, I will ask you. Until then, wear beige, sit down, and shut up.
(Please note that if someone suffers with a similar or same affliction, it is highly likely that they will, and extremely beneficial to share knowledge, and some people without any condition might have good advice and suggestions, this was in reference to aquaintances and people who don't fully understand what you deal with).
So let's re-cap....
Be quick to listen, and for everyone's sake, please be slow to speak. Choose your words carefully, because coping with illness is hard enough, no one wants to cope with your insensitivity too.
A prayer that I wish some people would whisper before speaking... "heavenly father, I feel your presence and your hand on my shoulder, but for today, could you put it over my mouth instead? Amen".