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.”
“You aren’t sick.”
“Your diagnosis isn’t real.”
“I wish you would have more fun [meaning, presumably, with the speaker].”
“I wish you would eat a more varied diet [after previously praising my practitioners, whose recommendations I follow].”
“I wish you would get counseling [I already was, specifically addressing the challenges of chronic illness, which wasn’t what the speaker had in mind].”
“I wish you would eat meat [I haven’t in 36 years and only recently got sick].”
“You’re definitely getting better [I didn’t see it or feel it].”
“Surely you’ll feel better in the spring when the weather’s nicer/in the summer when the sun’s out.”
“You need more fresh air.”
I recently (kind of, I lose big gaps of time, so “recent”is subjective) moved & had to find a new doctor. Upon meeting me and reading the sheet I prepared for our first meeting, he says “fibromyalgia huh? Well, good news is, it won’t kill you”. I knew then and there that I was dead in the water with this one & have been searching for a new doctor ever since….
“You are a young, beautiful, white woman. You should not be this way.”
“I don’t understand why you can’t go to work with the drain/bag. Lot’s of people work with bags.” My pancreas’ tail was just cut off, my stomach dissected, my spleen and 14 lymph nodes removed and my pancreas is leaking into my abdomen and infected; not the same as a colostomy bag, which I’m sure is very difficult to deal with in a work environment.
“You look so refreshed.” This from a co-worker after being out of work for 8 months.
“You’re so lucky you don’t have to get up and go to work every day.” After I went on permanent disability. I wish I could go to work every day like I have for the past 40 years, SMH.
“Couldn’t you work from home? Telecommuting?” No, I don’t know how I will feel in the next 5 minutes, let alone commit to a job 5 days a week.
And then there are the looks of disbelief, roll of the eyes; that you must be faking your illness. “Well you look fine.”
‘Oh yes, I have those pains too’ from someone in her late seventies, not seeming to get that I’m 30 years younger than her and this could be a problem.
I was told by my best friend u have every disease known to man and nothing is coming of it. U haven’t had any surgeries yet.
I have had multiple surgeries and procedures including radiation. I am waiting for more and the public system isn’t very fast. Once you have one thing it leads to so many others.This was coming from someone that can afford the private system. To be told ur lying from a best friend is heart breaking. I think its time to end the friendship.
One of my best friends said similar things to me; someone who had previously been my biggest supporter
. Sadly the friendship is nothing like it used to be because I can’t be who I was due to my illnesses and daily pain.
I hear often it’s” mind over matter!!!?!?! And my response is ” I’m not a weak person, weak people cant deal with being in pain day in and day out with no end in sight…oh and it can’t be seen, so then I get the judgment or looked at like a freak….whatever other people that don’t have severe chronic never- ending pain will NEVER understand ?
I really needed to read this post and comments today. Joanne’s comment is just ‘me’ …others always seem to think I just don’t push myself enough. I really think they think if you just push through that wall when you hit it you might be surprised and it could get better. It’s just that you back down each time. I have M.E./chronic fatigue and several other illness’s, all of them invisible or unmentionable. M.E. gets much much worse if you don’t listen to your body, I’m now 67, had this for 30 years I think I know myself by now…ah the innocence and arrogance of the young, and sometimes the not so young too!
“But, do you want to get well?”
Like if wanting to be healthy again would suffice to make it happen, as if my chronic pain is due to ‘not wanting’ to get well…
ROAR!!!
oh, that one is AWFUL. anyone who says that is just ignorant.