Monday, June 23, 2014

Things You NEVER Say to Someone With a Chronic Illness

I have read a ton of different lists people have made of things you never say to someone with a chronic illness. I stole some from various other lists, added some of my own and combined some together. Just a little food for thought! ;)

1.) "You don't look sick" or "you look fine to me".
This was #1 on almost every list I looked at for a reason. It's rude and it's hurtful. I am sorry that my pain is not visible to you, next time I will work harder to look crappier? Really? What are you even supposed to say to that? A few times I replied to the "you look fine to me" with "well it's a good thing my disability isn't up to you."

2.) "I wish"
This means statements like "I wish I didn't have to go to work either," "I wish I could lose weight that easily," "I wish I could take a nap every day..." Do you want to know what I wish? I wish I could live a normal life, finish college, find a job, go out with friends and not miss all sorts of events because I am sick. I don't think this is meant to be hurtful, although to me anyway, it's much more so than "you don't look sick." I think the people that say it are only thinking about themselves and their life. We're human we all do it, but before you speak remember your audience.

3.) "Have you tried this?"
This is just plain annoying lol. Everyone has a cure for everything. But excuse me for taking medical advice from actual doctors and not the stock boy at Wal-Mart. If you think drinking vinegar upside down while being stung by wasps will cure rheumatoid arthritis then please go for it. I am all for some "natural" cures. I have done acupuncture and massage and various other things, but bizarre and disgusting "cures" found on the internet with no scientific backing I will pass on. Thank you very much!

4.) "You should get out more" or "you need more exercise."
If you haven't read something like The Spoon Theory I will try to explain this as best as possible... If it literally takes all the energy and strength you have just to get dressed much-less take a shower, do your hair, makeup etc. you're not going to be going out on the town. As for the "exercise" I would love to walk my dog more, or be more active in general but simple things like going to a concert and standing on a concrete floor for 2 hours makes my joints so sore and painful it takes 4 or 5 days to recover. Naturally I need to pick and choose carefully what activities I choose to participate in if it means taking a week to recover.

5.) "You're not the only one."
"You're not the only one that is tired" or "you're not the only one with muscle pain." I know EVERYONE has pain and gets tired. What makes this so incredibly hurtful to me is it makes me feel like people think I am weak or a wuss. My pain management doctor does pain research and has said that RA patients have one of the highest pain tolerances of any group. Having a specific body part or joint that has been injured is very inconvenient and painful and frustrating. However, it is different than EVERY joint/muscle in your body hurting EVERY day!

6.) "I have a higher pain tolerance so I could handle it better."
This one is very personal because a family member said it to me. I think of all of these this is the most hurtful. Until you have lived with the pain EVERY day for YEARS you have no idea how you would handle the pain. There is a lot that goes with chronic pain too. There are lots of medications, side effects of medications, blood work and imaging tests, anxiety, depression, stress, fatigue, etc so even if the physical pain is something you can handle better what about the rest of it?

I am sure I am missing lots more, but these are the ones I get that frustrate/annoy me. One of the hardest life lessons is to accept you can't control what other people say or do. Especially if that person is someone you're close to who makes ignorant comments. So like I said before consider your audience before commenting or giving advice. We've all done it and we all need to learn to shut up more and listen more!