5 things to think about before saying to someone with a chronic illness (especially if you are an ass)

In the chronic illness community we have a lot of inside laughs and some venting about things we hear pretty often. There is an entire website built around the ever so popular reaction of but you don't look sick. So I thought I would poke some fun at things I have heard myself and have had others tell me people have said to them.








~ The ever popular "but you don't look sick"

What I rationally know you are saying is "I am having a hard time wrapping my head around the fact that you are chronically sick, you look healthy" (I internally can replace healthy with 'smoking hot' if I need an ego boost)

What I hear on a grumpy day, or if you are in fact an ass "there is no way it can be that bad, you look fine".  If you can imagine for a minute the last time you were sick, remember that first day or the tail end of it when you were wiped out but had to get your act together to go to work, church or social event? Yeah, that is me on a good day. I can get my act together and with enough time I can get the hair done and the make up on. Please don't undermine my condition by my effort to have some normalcy.

~ You're on Facebook a lot / You post pictures a lot (replace with anything done from home really)

What I rationally know you are saying is "you're on Facebook a lot" see I am not irrational, I might even add an internal "you're on Facebook a lot and you are hilarious, I look forward to your posts". 

What I hear on a grumpy day, or if you are in fact an ass "Good God have you nothing better to do?" or "You post pictures doing things, it can't be that bad". Yes, I am on FB a lot. I have it on my phone and iPad which are with me all the time. I spend more time "relaxing" than most so I tend to use things like social media as a main form of social activity. I am not having lunch with friends or making small talk with work friends. I post pics pretty often because if I am putting the effort into getting out it is kind of exciting for me. When I am feeling good I want to shout it from the roof tops, so yep... you're probably gonna hear about it.

~ My Aunt (neighbor, sister's friend) had something like that and she got better after eating blah blah (taking blah blah or spontaneously healed after doing blah blah)

What I rationally know you are saying is "I hope there is a chance for you to be better one day" and I do to. 

What I hear on a grumpy day, or if you are in fact an ass "you are clearly not doing something well enough because my Aunt/neighbor/sister's friend is better now". I promise that I am in very regular communication with specialists. If broccoli is the cure I am going to hear about it. 

~ "At least it isn't terminal"

What I rationally know you are saying is "it could be worse, you have a lot to be thankful for". Let me tell you I don't take this lightly. I cannot imagine the impact a terminal illness has on a person and loved ones. I am thankful that my condition is not terminal.

What I hear on a grumpy day, or if you are in fact an ass "it's not like you're dying". By the way this was said to me by a doctor while in the ER... grumpy day and he was an ass... So is this the new measure on how I should weigh news? So the next time you get horrible news, something really upsetting, imagine the person delivering it adding at the end "hey at least you're not dying", seriously! At what point does someone else need to point out that the good news here is that you're not dying?

~ "You shouldn't dwell on it so much"

What I rationally know you are saying is "I worry that the focus on your not being well is negative". See, on a rational level I get what you are saying.

What I hear on a grumpy day, or if you are in fact an ass "OMG this again". This is life altering and impacts my family every day, even on my good days. There are many things about me other than my illness. I love reading, I have been an Army wife for more than a decade, I am a mom of four kiddos, I have a new fixation with hair braiding and am an loyal Walking Dead fan. I chose to be open about Dysautonomia. It was an decision my husband and I made, talking about the pros and cons of letting people know the details. If all you know about me is my illness then kudos to me bringing awareness to someone who didn't really want to get to know much else about me.

This post was brought to you by dumb things people say and ecards :)