This week, I tried an experiment. Our Questions Of The Week (QOTW) feature has been awesome this summer, and I thought I’d try asking a question about something negative (I usually go for the positive, or at least neutral). And y’all went CRAZY! Here’s the entire original post; it has 62 comments!

I’m so in awe of this community. We have to deal with so much, and so many of you posted things and got a ton of commiseration and support from others – I’m really proud of you all. I’m working on a PDF soon that will address potential answers (snarky or not) to all these comments and more.

Here are some examples:

In no particular order: a list of things that people say to us that make us want to go all HULK SMASH on them. Feel free to add more in the comments. And to share with folks so they learn what NOT to do. AND this is only a partial list of what people said on Facebook. For the full list, visit the original post, and feel free to comment there, too.

I’ll start: “It could be worse” – someone said that to me yesterday and it made me so mad. Of course it could be worse! But as someone who’s so dang positive all the time, for one moment, can I just get a little support? And then you can help me find perspective again? But maybe NOT by saying “it could be worse”?

“But you’re too young to be disabled or sick” (usually with “it’s such a shame” tacked on to it if in a wheelchair and therefore my M.E. is visible) – my age has nothing to do with it and it most definitely doesn’t make me feel any better to be reminded that I should be in work/in love etc because of my age.

“Exercise more , that’ll get rid of it.”

“I am so sorry you’ve chosen to tie yourself to Big Pharm. I wish you could have found alternative or holistic solutions. I mean, have you tried…”

“Oh, I thought you must have been all better as I see you leaving the house”… ugh. Made me feel so frustrated because I know that is how SO MANY people think.

“You miss too much work, maybe you should think about getting on disability.” (In reply, one babe said: “I did go on disability then was told by the same people, ‘you’re so lucky, how does it feel to be on permanent vacation.'” Then the original poster said this: “I’ve totally heard that when I return from a medical leave. I guess the trick is to learn to disregard those types of remarks. Easier said than done tho.” #truth

“My biggest challenge has been silence. It was so hard for me that because my chronic pain disorder involved *gasp* my vulva, no one would talk it about. Not even other women in the same boat. I realize that an inability to discuss vulvovaginal pain is a reflection of where we need to heal and grow as a society, and is largely not a personal flaw. But it sure is tough to work really hard on your own baggage, be brave and be honest, spit it out – and then be met with mumbling, awkwardness, and the realization that the conversation is over. It’s no fun when just being honest triggers so much baggage in someone else that their brain short circuits. I’m really happy I came so far in healing my own thoughts, but man, what a lesson in the power of individual wholeness/baggage to affect a wider community. when I do meet folks who don’t freak out, I’m like yay! I adore you! Let’s ride unicorns and shamelessly talk about vaginas forever!!!!”

“Well, It’s not like it’s cancer or something” The implications being you shouldn’t need any pain control or specialist or a second thought. What’s the big deal is what they are saying. To which someone responded “I have chronic conditions and when I was told the same thing, by a stranger (at this point I’m done being miss manners) and when I told the person I had battled breast cancer (which is true), they responded well at least you’re not dead. Gee thanks!”

“You know if you didn’t think /talk about it all the time it wouldn’t bother you so much.” I have basilar migraines which affect the blood flow in my whole body so when I have them everything hurts , they also mimic heart attack and Stroke. But they also increase my risk for those things, they have 5-minute warnings from onset to full blown and can/have last,ed weeks sometimes months.
People also say “This person has migraines and doesn’t go to the ER as often as you do, maybe you should try Excedrin and drink more water (throw in ridiculous headache ‘cures ‘).”

“You know people would like you more if you weren’t sick all the time”

“At least you’re not in the hospital, at least it’s not terminal.”

“That I have the good cancer. I was not aware there was a good cancer. How did i get so lucky? (that is my most recent diagnoses).” To which a person responded “Oh does that mean you get the good chemo? The one that’s all sunshine and rainbows and unicorns?” #iloveyouall

“A hematologist told me that I don’t look sick and what I really needed to do was get married and have babies.”

“I deal with A LOT of pain between MS and arthritis in my spine. A pain specialist said I should use my mind control and I cannot BELIEVE this.”

“Only one person said this but it cut deep: “you’re so much more than your illness” (when trying to tell me to shut up about it). Thanks, tips. *eyeroll*”

“You don’t look sick.” #classic… To which one of you replied: “When they say I don’t look sick I use the line…’well you don’t look stupid.'”

“Get a cleanse, eat the right food, exercise and all will be well.”

“Also people telling me I got this condition because I don’t have enough faith and that I must not believe strong enough and if I just pray/worship stronger….”

“I had a friend once say, ‘Everyday is Saturday for you,’ because I couldn’t work anymore as a direct result of the pain and exhaustion.”

Said to the parents of a very sick kid: “Maybe she’ll grow out of it.”

“‘I have a migraine, too’ — as they go about functioning normally in their daily routine.”

Oooh, an issue I’ve been having a lot of trouble with lately: ‘we knew you wouldn’t be able to go,’ when telling me about plans for family trips without even inviting me. I also get super-pissed because they always work these trips around people’s (especially my niece’s) work/school scheduled, yet it never even occurs to them to plan a trip around my symptoms. To say ‘hey, we want to go on a family trip, what are you capable of, or what would be easiest on you?’ My illnesses aren’t as legitimate as their jobs.”

“Oh yeah, and my dad also tells me to exercise, and when I told them I was desperate to meet friends out here, he said ‘well if you go out dressed in your pajamas and such, you’re only going to meet a certain type of person,’ and I thought, you mean like me?”

“You just need to pull yourself up by your bootstraps, and just push yourself.”

“Have you tried going gluten free?”

“You’re thinking about your illness too much. Just get out of the house more.”

“How’re you feeling today?” Every day, the minute I wake up. Or, “I thought you were feeling better?” To which one of you responded “That’s always hard because if I’m honest, I’ll hurt or disappoint the person talking. My parents told my extended family to not ask me how I am but if I’m better, I’ll let them know.”

“I’m tired too.”