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

March 4th, 2013 by Carrie, the Just Mildly Medicated gal

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 too.

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 a 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 :)

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54 Responses

  1. Perfect !!!..I know each of these all too well (unfortunately)

  2. Kermommy says:

    That last ecard is priceless. You are awesome. Hope today is a good day.

  3. BabyDoll says:

    I Love this blog. I follow you on FB as well because I have three auto immune disorders that cause life altering changes to my life.
    I dont tell anyone because I dont want to hear the “well you dont look sick.” Because I might punch em in the throat. I also am so afraid that no one will understand and that I will become a burden and pushed to the side because people are afraid of “Catching an Auto Immune Disease.” The word disease seems to make idiots believe I am contagious or something. So I have changed the word Disease with Disorder and the looks and stepping five steps back away from me have stopped…….
    I am also a mom of 2 boys and 2 step daughters, my husband is the one that has to see me fall all the time, pick me up and laugh with me in front of our kids….
    Thank you for speaking out because I am learning that maybe I need to let the peeps in my life know what is really wrong…. Instead of them not knowing…..

    • Thanks for following! I went awhile with only family and my closest friend knowing. It became to hard for me because I felt like my new friends (I had just moved, go Army life) would think it odd that I would have to cancel plans. Other things like mine is an invisible illness… until I pass out or start getting all convulsion-y.

      I was at a dinner with a bunch of new friends and my arm started twitching, then I started sweating and freaking out. After that hubby and I talked and decided I would “come out” and if I was going to let people know I was going to do it in as big of a way as I could. The birth of Just Mildly Medicated :)

  4. Penny Roach says:

    Oh my goodness! You are so funny and hit it out of the ballpark on this one. I got out of the cardiac unit a couple weeks ago and was out getting groceries and such because we were down to NO food. Somebody in the store saw me and asked how I was feeling and said “you don’t LOOK any different”. Huh? How exactly would my heart issue make me LOOK different? Other than the fact that I was no longer wearing a hospital gown? So I said well you could have seen just how sick I was had you bothered to visit me in the hospital. You could have heard a pin drop!! Guess I was having a “grouchy” day!

  5. It’s just wrong but I laughed at the thought of keeping the hospital gown so you could work on that ill look.

  6. Lindsay says:

    LOVE the e-cards! Hilarious!

    I HATE when people tell me I probably just need a nap. I took a nap. A four hour one. And I slept 12 hours last night. And I’ll probably take another nap later today. And, I’m still tired. It’s called chronic fatigue, dumbass. :)

    Love this post. If you don’t mind, and if I can figure out how, I’d like to share this on my blog.

  7. Great post! Has cheered me up a bit!

    x Hayley-Eszti


  8. in pursuit says:

    This turned out pefect!! I love how you approached it from the “what I hear on a good day vs. what I hear on a bad day”. Well done friend.

    • Thanks. I thought it was important to let “the normal folks” know that it isn’t so much the things that are said that are upsetting, it is really more the frustration. I mean really the ‘but you don’t look sick’ is a huge thing for the chronically ill community but I’d be more offended if someone said “yeah I thought you looked a little off” ;)

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  10. Anonymous says:

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  11. Jeremy Knauff says:

    I LOVE this one even more than the rest, and the bar was already set pretty damn high! Great article—again.

  12. Julie Ours says:

    Thanks! Having had fibromyalgia since childhood, osteoarthritis and now BREAST CANCER I can completely relate to this. Glad I found you through thebloggess!!

  13. Linda Wilson says:

    Fantastic piece – I absolutely love your sarcastic honesty!

  14. Just perfect! I’ve had those same exact thoughts sooooo many times (have Lupus and chronic lyme issues).

    Love your blog!

  15. Joann says:

    Totally love this post! I have thought the same thing many times. Obviously, I have a lot of grumpy days or I know a lot of asses!

  16. I know exactly what you’re talking about! I have a post on my blog about stuff not to say to people who are chronically ill. My biggest one I get is, “You’re just depressed”. I HATE that. I am not depressed. I’m chronically ill with POTS. Love this post! Nice blog! :)

    Daniel Lee Johnson

    • Amen, depression deserves its own respect. I get down over the things I can’t do but no, I am not depressed. Just like depression isn’t chronic fatigue. I wish people wouldn’t just overlap illnesses but take a minute and understand the differences.
      Glad to have you here!

  17. speccy says:

    I just found you through #HAWMC, and I love this. I’ll be hanging round for a while, catching up, laughing, agreeing etc

  18. Jamie Clark says:

    I just loved and related well to this post. I liked it so well I shared it on my blog LOL People are ignorant at times and should think before they speak but they say ignorance is bliss LOL I suffer from major depressive disorder and have suffered from depression for the last 24 years. I thought that depression was something that would go away, boy was I wrong. I do control it somewhat with medication but it always seems that the medication could work just a little better LOL But I manage and I live somewhat normally Blogging keeps my sanity! And besides Blogging is cheaper than therapy. Oh yeah, I found your blog on the blog The Pursuit of Normal. Good luck to you and look forward to reading more posts!

    • What? You mean you can’t just snap out of that ;) Its is hard what something isn’t working correctly inside of you and people can have a hard time understanding how much you want it to work. Blogging is good therapy.
      BTW I looove some Pursuit of Normal!
      I’ll be checking you out too!

  19. Angela Capel says:

    I love this! So true. I have learned who my true friends are. A Chronic illness will show you quick. It was upsetting at first but I got over it. I posted on facebook or awhile and lived in a small town and what everyone was saying got back to me fast. So I stopped posting. In my opinion if they don’t want to read it then delete me. Seriously!!! Don’t want them as a friend anyway!

  20. Sylvia says:

    Oh, I do hear you sister! We’ve hear many of those same things about Bethany. Especially the last one! That’s one reason why I started blogging-so I could keep talking and people wouldn’t have to be “burdened” or bored with listening!

    With Beth- people assumed when she was seizure free for 6 months that she was somehow cured of all her massive tumor/stroke/seizure brain damage and would suddenly be able to start living a normal life and thus I could start living a normal life. Never mind that she’s still a 3 yr old in a 14 yr old body, still has moderate autism and all that goes with that diagnosis, and never mind that medications do not cure epilepsy!

    Wasn’t there a song, “People just don’t understand?”

  21. Anonymous says:

    Just stumbled across this and it couldn’t be more true!! The last sentence is incredibly powerful and unfortunately the reality much of the time.

  22. I really, REALLY hate it when people who have never had the illness themselves say things like “Well this person has(had) that and they are fine now.” How do you know? Seriously, do you talk to that person? Because some illnesses you just never come back from. Even if you are “better” You’re never “just fine now.”

    Speaking from a woman suffering from “only” situational depression.

  23. TGMMD says:

    LOL! Love this! Honestly, some people don’t exactly know what to say, or better yet, what NOT TO SAY! Now i’m educated! Thanks! LOL ;)

  24. Jane says:

    I know all those feels, girl! I’m possibly going to email this to stupid ppl in my life who say this stuff to me.

  25. Sylvia says:

    Ha ha! I see I’ve commented before! Well. I’m going to comment again! How about this- maybe we are feeling so isolated being home alone so much that being on FB a lot is our lifeline to the world! I am not chronically ill, but I am my daughter’s caregiver. We are both isolated and home alone a lot. No one bothers to visit because as you mentioned above, we are way too boring!

  26. Donna says:

    My doc was sensitive enough to put it this way.. “The good news is you’re not going to die from this, the bad news is you’re going to wish you did”. Yup, an ass.

  27. I love this. People really do say a lot of dumb things, and I appreciate your sense of humor about it in this post–even when they are being asses. I love your blog and am grateful to know more about Dysautonomia now.

  28. I remember this so well. It was one of my all-time favorite posts! It made me laugh and cry when I just read it again. Sharing!

  29. […] 5 Things to Think About Before Saying, unless you’re just an ass… […]

  30. ReneeM says:

    OMG!!!! I am reading this post to my husband. He’s kinda going through some of these but they are more like stages on how he’s dealing with me have CRPS. I’m so glad to hear that someone else feels like I do. Keep up the good fight!

  31. Kerry says:

    This was so great!! Said with sarcasm and humor, but really getting the message across … love it!

  32. Tanya Nemley says:

    Girl you are preaching to the choir here! I’ve been through all the negativity from the …”well meaners!”

    I wrote about it on my blog also….


  33. DianeC says:

    What a perfect blog! I’ve been dealing with my chronic and unseen illnesses since I was a little girl, (unknown to me or my Mom, who was usually on the couch asleep, so I am assuming she had them too and was never rightly diagnosed or treated.) Other than Chiropractic, Valium, alcohol, aspirin, and cigarettes, Mom was alone with her pain. Unfortunately, she wasn’t very good at communication, so her pain came out as pickiness, yelling, OCD, misunderstanding, self-centeredness, fear of doctors and dying young, and a usually Pissy attitude. There, but for my medications, would I be. She’s resting in a nursing home and getting the care and attention she needs….but she also has dementia, so we still can’t relate to each other.
    Being divorced 10 years has been scary for me. Unable to work outside home (I draw, paint, illustrate, make jewelry), I raised two Amazing kids, often by myself. As Fibromyalgia became more widely known, I learned that all my symptoms fit into that basket. But it was a diagnosis with no Cause, and no Cure.
    The most ass-inine thing my ex used to say to me was, “You would feel better if you would just exercise”. I think he thought I was making up this invisible barrage of symptoms. He found a more active girlfriend, but being older parents has made them both slow down. Compassion finally came.
    Meanwhile I kept doing research and testing. In 1999, age 39, I diagnosed the Fibro. Then Depression (from the nagging pain in my legs, and inability to live life fully), then in 2010, an MRI showed I have Chiari 1, more MRI’s showed arthritis, degenerating discs, a Hiatal Hernia, an Adrenal Adenoma, and more. I suspected Endometriosis, too, and had a hysterectomy, still no relief from the pain. But now I could add menopause, at 48 through still now(55) with Hot Flashes, weakness,muscle pain and jerking, IBS, etc.
    I didnMore research,(for disability I hope to get)from the show House, following notes to Wikipedia, links to Pubmd to Webmd, even complicated journals and articles… the flags for Ehlers-Danlos Syndrome kept popping up! Yes, I was also born doublejointed in my arms, bow legged and knock kneed, not athletic and not good with math and left brained pursuits…suddenly my WHOLE LIFE of conditions had a name.
    Finally, I could stop wondering, and focus on treatment!!
    “What Treatment”.WHUPS. Silent illnesses get little enough attention, especially with LONG-practicing MD’s., Versus researchers or students. The Neurology magazines and web are full of New, Pertinent info, that older doctors, especially Pain Management types, can’t be bothered to read and learn. Their main interest is how much your office visit can be billed for, and making sure you/I DONT get treated, so that we have to come back!
    Thank you for your cheerful and well written article!! I hope more patients will be proactive to figure out what they really have (& sometimes fibro is just fibro and is still a serious set of symptoms!). But, don’t stop there, and don’t believe every PA or MD, or try every drug they push at you. I wish there was a cure…for a genetic disease? Maybe someday, meanwhile we worry about our next gen’s, pray they get better treatment. It gives a whole new meaning to the “Aack, I’m turning into my Mother” feeling!!
    Sometimes I put on makeup and get “pretty” too. It made me sad to have my boyfriend say, “I only do it when we go out; therefore I am doing it for others, not for him”. I tried to explain, “I did it for ME, for my self esteem, and so that I would look worthy of being out with him”. Today I am home in bed…I just got pretty, and he didnt even notice. That was a waste of time and energy. Standing for 20 minutes hurts. Well, I tried. Same person inside as out…I dont have to look sick, to feel like crap.
    Thank Goodness my fellow Zebras understand. Love You!! ((Hugs))!

  34. unfortunately you cant even use facebook when you are ill everyone will leave a comment on your wall.

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