What you shouldn’t say to someone who is chronically ill

10. “It’s just a bad day”
Um, no. A bad day is when you burn your toast, miss your train, get a flat tyre, spill coffee all over your white shirt, get gum on the bottom of your favourite shoe, etc.
A bad day usually lasts one day, or a few days at maximum.
This illness is not a bad day.
It’s my EVERY day.

9. “Have you tried…” // “You should try…”
I have tried 90% of the things you are just about to suggest.
I REALLY appreciate the thought, but the only thing I will be trying will be anything my Doctor or Specialist prescribes me.
I don’t want to try any herbal remedies that have been passed down generations and help you with your Gastro bug.
If you have not gone through this, then please, please don’t recommend that I try anything. I know what my body can tolerate. Just let me handle that.
Maybe ask me what I am trialling/what is next?

8. “Come out with me and you’ll feel so much better”
Um, despite what you believe, that is a no.
Again, I appreciate the thought of you trying to distract me, but I am sick.
Do you want to go out when you have gastro? or the stomach flu?
Um, no.
If I go out with you, I want to feel good. I want to be able to chat to you over a lovely meal, have a laugh and enjoy myself. I don’t want to have to link arms with you because I’m extremely dizzy, and unbalanced. I don’t want to feel nausea half way through our talk and run to a bathroom.
It’s a little hard when my symptoms are this severe.
When I feel better, we can go on a trip around the world.
But for the time being, how about you come around for a tea, or a visit? I would really appreciate it.

7. “At least you don’t have…”
Is that statement meant to make anyone feel better?
Am I meant to consider myself lucky?
Not sure about my other sufferers out there, but that statement makes me feel worse because I don’t know what is attacking my body.
I would rather have a diagnosis, than be in the dark about it.

6. “You need to stop being so negative”
I am most likely negative BECAUSE of the illness?
When something consumes you for so long, you have every right to have negative thoughts/moments. You are literally housebound, jobless, depressed and ill every single day. Would YOU be happy every day?
I could force myself to think positively every single moment of every day, but it doesn’t make the illness disappear, understand?

5. “You got this because…”
Most likely because I overworked myself, had a weak immune system and worked in a field surrounded by germs – but then again, I don’t even know why.
NOT because I don’t exercise frequently.
NOT because I have normal arguments with my partner.
NOT because I chose to work instead of going out and partying.
NOT because I don’t eat healthy (btw I do eat healthy)
Please, save your breath on trying to play Doctor and make me feel shittier than I already do. You have no idea why or how I got this, and we’d all appreciate it if you just kept your opinions to yourself.

4. “So, what’s wrong again?” // “You’re still sick?”
If you weren’t listening the first time around, I’m not wasting my breath telling you again. I don’t have the time, patience or energy.
And yes, I’m still sick. You would probably know that if you listened the first time I told you, or if you had more of an understanding of Chronic Illnesses.
There’s this thing called Google – heard of it?
Do some research.

3. “You’re just exaggerating/making excuses/want attention”
If I had a dollar for every time I have heard this, I would be rich.
I also love how most of the time, this statement is used behind my back.
Why would someone leave their dream job, stop studying, stop driving, spend all of their time at specialist appointments, feed my body countless trial drugs, and create pain and nausea and dizziness?
Walk a mile in our shoes, please, take them.
Get back to me in thirty minutes and tell me how you feel (because you won’t last any longer than that, I assure you).
I don’t know why someone would exaggerate symptoms like this just for attention.
My illness is not an EXCUSE. It’s an illness. Full stop.
Yeah, I want attention. It’s called SUPPORT and ANSWERS.
Maybe instead of spreading negative energy, you should check in on me once in a while and show your caring side.

2. “But, you don’t look sick”
Yes, I might not look sick today, but it doesn’t mean that I don’t feel sick.
I might be very good at hiding my symptoms (on the not-so-bad days).
You can’t see nausea or vertigo.
You can’t see digestive problems or abdominal cramping.
But I can assure you that I feel it.

1. “It’s all in your head” (my all-time favourite)
The only thing I can say to the people who have used this line before is;

Yes, it is all in my head.

I used to feel so hurt when someone would say that to me, but then one of my specialists told me that, it really IS in my head. It stems from the brain, which controls our entire body.
It might be my brain, it might be an organ, but whatever it is; IT ISN’T DOING WHAT IT IS MEANT TO BE DOING.
So, do not feel ashamed or upset, and most certainly do not second guess yourself if someone ever says this to you.
It really IS all in your head (hehe).

Things you CAN do for someone with an invisible illness:
– Ask how they are feeling and begin to recognise their symptoms.
Ask questions if you want to know more.

– If you want to buy a gift, ask if there is anything they NEED.
We don’t get out much. Sometimes we need little things like toothpaste or gum or milk.

– Visit them!
It’ll usually have to be a short visit, because we need our rest, but I want to hear about who you are dating, what you ate yesterday, how studying is going etc etc.


– Be supportive! There’s nothing worse than having to face all of this alone. Just tell us you are there to listen – most of the time we don’t even want a response. We just need to get our feelings out…

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113 comments

  1. This so much! Oh my god! Though to be honest, my illnesses don’t require a need for friends/family to buy me gum or toothpaste or anything of the like as I am dependent on my mother, but even just a cheering up present is nice, as are visits and support. Questions are also appreciated more than assumptions/

    Liked by 3 people

    1. Don’t lose hope. Try and make them understand. My parents were the same until I got so sick that they had no choice but to believe it/offer support. Sometimes they still don’t know what to say, but them just being there for me really helps ease the harshness of the symptoms xx you are not alone

      Liked by 3 people

    1. You sure did! I remember when I was struggling with anxiety and everyone thought they had the answer. The worst part was that what helped last time wasn’t helping today and there was nothing I could do about it.

      Liked by 2 people

  2. Again you have nailed it! You speak my soul. I wish most people understood this concept. They have all the right intentions but think that generic advice is going to change something as if we haven’t heard it all before. As if depression is cured by “looking at the bright side.”

    Liked by 2 people

  3. Through my panic attacks and anxiety history, “it’s all in your head” was my dad’s favorite one. And it still is, even after my diagnosis and therapy… “It’s because you are too negative” was the second favorite one.

    Liked by 2 people

      1. You made me smile when you said, “the older generation”. Sugar, I am of that. I am 69 years old and have had illness since I was a wee child. Back in the day, they called it “Crazy’, which used to bother me. If they had gone though 1/100th of what I had before I was even 5 years old, they would be depressed as well. I had no one to talk to about anything. Sorry to whine, but it is so nice to know that you young people have more compassion in your little finger than most people have ever had in the past. I honestly believe that God save the best for last. You are part of the best. Thank you for being you.

        Liked by 2 people

      2. Oh that is so, so lovely of you to say!
        Well, I can safely say that the true sufferers of this understand. I can’t say the same for the other younger people, haha.
        But, I’ve had to suffer too much. It’s forced me to grow up quickly. Age means nothing – old or young – handling something like this is excruciating mentally and physically. And it effects more than just you and I – it effects our families and friends too. I wish you had people to talk to about it all back then. You do now! You are not alone 😊

        Liked by 2 people

  4. Oh my word, you are in my head. I want to stand on a mountain top and shout it to the world. Of course I would never make it up the mountain. I’m not into shouting. I would however, love to reblog this with your permission. Hugs.

    Liked by 2 people

  5. Insensitive people, they believe it all a joke but what really is the quip. When they contract say the common cold or the flu they act like they’re dying. Get over your selves your shit isn’t as severe as ours!

    Liked by 2 people

  6. I see it more as… everyone has a different tolerance of things. I’m horrible with the flu, but I know that these symptoms are stronger. I guess they’d grow accustomed to it all too if they had ro suffer for as long as us…

    Liked by 3 people

  7. Fab post! I remember having to call my Nan over to my house whilst waiting for the doctor come on an emergency visit and whilst I was crying and screaming in pain she told me that I was not the only person who was ill as she had woken with a sore throat! I screamed back to her ‘seriously! You’re trying to play top trumps with that card!’ When my Mum came home my Nan complained to her about my attitude but thankfully my Mum told her she deserved it. People sometimes can’t see it even when its right in front of them.

    Liked by 4 people

    1. I’ve had times where I would ask someone to just sit and read to me so I could stay calm while I waited for the ambulance, and they got so frustrated they broke glass out of my night stand, then didn’t clean up the glass, they locked my wheelchair so I couldn’t even get to the bathroom by crawling under it, as there was glass all over the floor. But I think perhaps I’d better blog it rather than rant here. sorry.

      Liked by 2 people

      1. Oh my goodness, that was awful. No excuse for that. I hope your ok now and that you’re free from such people. I’m sorry for the late reply. I’ve been struggling with a few things lately and it’s taken me a while to get writing again which is silly as it helps talking to people. I understood you when you said that just having someone read or sit with you can help keep you calm. My Mum’s fabulous but she doesn’t understand that just sitting and being there is often more helpful than fussing around. She leaves the room sometimes when I’m screaming in pain as she says she can’t do anything but just being there is help. I hope you’re ok at the moment xxx

        Liked by 3 people

      2. That is one of the saddest things I’ve heard in this community. I’m so sorry you did not have the support you needed. I hope you have better support than that.
        Yes, just having someone there, who is calm and talking in a calm voice helps.
        The anxiety that person must have caused you had to have made you so much worse.
        I am so very sorry you had to go through such a horrific event.
        May it never happen again.
        I hope things are better now.
        My heart goes out to you.

        Liked by 3 people

  8. Hugs…I send Lotsa Hugs!! Hope the expressive writing brings the very answers you seek! ❤️

    Mind if I create images inside of myself, of you feeling wonderful & whole? 🌅

    Liked by 4 people

  9. Number 4. My all time favorite. I purposefully don’t answer my phone when certain people call. And the greifers, fuck I had a person tell me to pull it together while involuntarily admitted to critical care. Said, this is getting “old” … Lol. While in the hospital my Mom, Dad and 1 couple (a life long friend / his wife) came to see me. My fellow occupants became some of my closest confidants.

    BTW how are ya feeling today 🙂 I know yesterday I couldn’t eat at all, the nausea was too much.

    Liked by 2 people

    1. Hello (:
      Well, here it is 4am currently. I’ve had unbroken sleep due to stomach cramping. Yesterday was actuLly a good nausea day. I’d like to say the same for today, but judging by the stomach cramps, I may be in for a rough ride 😦
      How are you?

      Liked by 1 person

      1. Oh my bit of a time difference eh. I slept ok, bit of vertigo this morning. Nausea till I ate something. I know it seems counter intuitive to eat when nauseated but it works for me. It has to be something fluffy tho. And bland like a muffin or bread… I stepped outside this morning tho and it is beautiful. The sun shine is hot on my face. I love the mix this time of year, the air is cold but the sun is hot. Delightful 🙂 even if I do feel like I’m going to simultaneously shit and vomit at the same time 😐 lol

        Liked by 2 people

      2. I ate soo much chocolate today lol. A colleague of mine was leaving for better opportunities and there was cake. Then I tried this vanilla & cayenne infused dark chocolate. I’m gonna pay cause it one of my trigger food but oh the bliss 🙂 if I’m gonna suffer I might as well enjoy it 😛 I’m glad u got some more sleep … I hope ur day is manageable! Can u eat chocolate? 🙂

        Like

      3. I replied to this but I guess it didnt go thru. I’m glad u were able to get some more sleep. And I have a dietary question for u. Can u eat chocolate? I can but in very very limited amounts but when I do it is oh soo satisfying. I had a vanilla cayenne bar yesterday. 70% dark. With a little coffee which is also a no for me. But every once n a while I get brave and test my GI tolerance. Often the results are poor but the precursor is soo soo good 😛

        Liked by 1 person

      4. I feel like I replied to this haha. That’s okay.
        I’m not a fan of chocolate. Never have been. If I crave it, it’s usually only Dark or Ferrero’s.
        Although I certainly pay for it later on.
        I have one coffee a day (probably shouldn’t) buuuut my entire diet has changed because of this thing! I’ll take the suffering if I have to, to be able to enjoy something…

        Liked by 1 person

      5. Yeah I think my WordPress phone app broke for a moment. I am out of the house a lot cause I can’t sit still with the nausea … Gotta move. Thanks for replying twice 🙂 I feel soo VIP 😉

        Liked by 1 person

  10. Good grief…could have listed those too! So glad to be reading your blog, the invisible illnesses/conditions are the ones that hurt the most sometimes. You sound very positive…I’ll send some extra positive from England (will it need a visa ;-D) and hope you are having a good day today. Love your writing! Jem x

    Like

  11. Thank you for saying it so well. Been there, done that, bought the t-shirt, then burned it. Sorry, that is a very old saying. I am going to post this on my facebook page if you don’t mind. I keep sending my friends things where people can say things better than I can. You are now one of those. Hugs, from a distance.

    Liked by 1 person

    1. Oh thank you! It is hard for us to hear… But something I have learnt is that we aren’t alone in our fight.

      Yes of course. As long as it is the link to it. I’m not fond of people just copying and pasting it x thank you

      Like

  12. a good book to read that helped me that you might find useful – Why Can’t I Make People Understand? Discovering the Validation Those with Chronic Illness Seek and Why by Lisa Copen

    Liked by 1 person

  13. Hi Cassandra,

    I’m Steffie your college, I have got Fibromyalgia and M.E. Yesterday I was sad and probably whiny, because it’s enough, the chronic illness, but I have a earinfection on top of things. I was telling my nine year old that I’m tired of it,

    and he said ” mummy, it’s a good thing, that you are sick, because there has to be yin and yang in the world, you are kind off a hero, and because you are soooo sick, many other people will not be sick, because of you, and if people like you weren’t sick, “Normal” people wouldn’t know how lucky they are, to be healthy” sweet thing,

    it’s all so logical in a nine year old mind.

    But people really don’t want to see you anymore, it’s to hard, the confrontation that you as a person are so breakable. They want to fix it and if that doesn’t work they rather ignore you. And therefore they aren’t very grateful to by healthy.
    They rush about, pass you by, and ignore you, so they can complain, about the wheatear or traffic.

    Hahaha, but we know better, every little second that is painless, I will see the sun, or the rain, or the thunder, and fully absorb the beauty surrounding, my broken body. I wish you strength and I’m honoured to be your college.

    Liked by 1 person

    1. Can I ask a silly question? I have recently had migraines and cannot get rid of them. I’ve been put on every medication… it’s gotten to the point where I’m in bed, in a dark room, unable to hear sounds…
      How on earth do you manage them?

      Like

  14. Nobody seems to want to ask (or maybe they’re not willing to actually do anything) what they can do to help. Why can’t someone offer to really help? do the dishes? Maybe pick up some groceries? Tidy up a little? Bring a good movie to watch?

    Liked by 1 person

  15. I’d visit you but I am far away in The United States. I will listen to you if you need to get your feelings out. And I will write you the stories. I hope you feel better real soon.

    Like

      1. Thanks Cass. Your welcome. I am glad you liked my post. It’s true I would visit you if I could and would love to have tea with you. But I will listen if you need me and I will write for you.

        Liked by 1 person

  16. I relate so much to everything you’ve said here, particularly #9. I’ve been dealing with chronic illness for something like 5 years now… and I get SO tired of people saying things like “Have you tried taking mint leaves for the nausea? My great aunt’s cousin-in-law’s niece tried it and said it worked for them!” and “You need to start taking turmeric pills- they work like a miracle to cure any illness!” Everyone is different. Each body is different. If it could have been tried, it probably has been by now.

    Another thing that annoys me is when people try to diagnose my illnesses just because a handful of my symptoms are similar to the symptoms their friend/brother/cousin dealt with. I’ve been tested for just about every possibility out there by professional- if they haven’t figured it out, you surely won’t.

    *sigh* It feels so good to say that bluntly. Thank you so much for sharing your perspective on this. You’re making a difference! Keep writing.

    -Rachel xoxo
    Recently posted: 10 Things You SHOULD Say to Someone with Chronic Illness

    Liked by 1 person

    1. Hi, my dear. I quite enjoyed your piece.
      I did have a little giggle at your comment because I too have had the whole ‘have you tried mint’ questions hahaha. You can only laugh. People are really trying to help, but we know our bodies better than anyone so it gets incredibly frustrating.
      Everything you feel, I feel too!
      And it is terrifiying!
      I’m always here if you need to vent, chat, cry…
      xxx Cass

      Liked by 1 person

  17. Found it! I probably have come across this previously (and have forgotten all about it amidst the chaos of final year undergrad!) but this is great. I completely agree. It’s great to share because it’s so frustrating hearing people say things like that. However I know exactly where you’re coming from, which is pretty sad…what happened to humility!? Xxx

    Liked by 1 person

    1. I agree! I hate saying ‘I know how it feels’ because I don’t want someone else to experience what I have.
      It’s nice to see people writing about the topic. It helps us connect/relate

      xx

      Like

  18. Cass, thanks for the recent like on one of my posts. I’m going through some of yours now, and I seem to be nodding away in agreement.
    My rheumatologist said 1) to me, too. Well, what he actually said was, “Of course it is – where else would your brain be? It doesn’t mean you’ve made it up.” But that’s never what people mean when they say it to us.
    L. X

    Liked by 1 person

      1. That’s good to hear. I’m new to this blogging malarkey, and have already managed to upset myself by offering help to people who then blanked my offer. I thought helping and sharing was kind of the point……!
        L. X

        Like

  19. If you were close by I’d bring you toothpaste…or gum. Invisible people see all the other invisible people. We’re very special that way!!!
    That’s why I love the blogging community so much – voices without form. No judgement – just beautiful minds and lots of love.

    Liked by 1 person

  20. Finally got around to reading this Cass, good stuff. Truth! I think i may step away from blogging for awhile, not sure if its good for my illness. Get to attached to the communication online and it leads into other thoughts and feelings, downfalls, etc. Youve been great, maybe its just my randomness and ill change my mind in 5 mins. I just dont want to feel anything for anything on a damn computer screen.

    I hate this crap. If i was well i wouldnt even write, im sure, i wouldnt fall, i wouldnt seem to, be my illness.

    One bad night after bad night.

    Joy comes in the morning…

    Like

    1. Fair enough, I understand.
      Maybe blogging isn’t for you? I’m not sure. I’d like to think that when I am better, I will still write… just to offer people hope. But that’s a long shot.
      Night !

      Liked by 1 person

  21. I love this post, its so true. I suffer from JHS and depression and I have had every single one of those said to me and pretty much have the same reaction in my head. Its so frustrating trying to get people to understand without being accused of wanting pity. Reading this really has made me feel better today, knowing I’m not the only one. Keep up the good work 🙂

    Liked by 1 person

  22. This is so perfect! Thank you, Cass! I’ve experienced these so many times, especially 9 and 2. “You don’t look sick. You look great. You must feel better, right?” And your suggestions at the bottom are right on target. Toothpaste. Yes!

    Liked by 1 person

  23. Reblogged this on dragonandrose and commented:
    The original author has a different chronic illness or invisible illness than myself. However, I think most persons with epilepsy can identify with this post. Have you ever had someone attempt to say something to make you feel better, but they did it in the worst way possible?

    Liked by 1 person

  24. Now I don’t have anything as bad as the symptoms you describe, but I do have something. 11 years later there is no explanation, no desire to follow up, and an awful lot of shrugged shoulders. Luckily what I have isn’t every day, but when it comes, it hits hard. I’ve heard everything on this list so many times from friends and family that it becomes easier (juxtaposition) to just power through. And that’s not easy. And it doesn’t work or make me feel any better. I don’t want any stronger pain but maybe if I did I’d get some understanding or sympathy. Late night visits to A & E because the pain makes me want to take my own life so I just get given Codeine or Tramadol because there is no other solution is not a solution. But that’s all I’m left with. Thank you for showing that there is someone else out there who can talk about these things! My thoughts are with you

    Liked by 2 people

    1. I have not read this post in a long time. Thank you for commenting on it. It was nice to reread.
      I’m sorry you have been suffering for so long. I assure you though that even an increase in pain does not bring sympathy from others, or understanding. Humans are… strange creatures when it comes to helping.
      I know the feeling of being given medication to “stay quiet”. It is not a solution, but we don’t have another way. We haven’t been given one that works. I understand entirely. Our symptoms may be different (or maybe more similar than you think), but I really do understand.
      My thoughts are with you too. I quite enjoy your pieces. They are original, and always interesting!

      Liked by 1 person

      1. Thanks for plugging me at the bottom there! Glad you enjoy my work, hope to see you there more regularly!
        Our symptoms are quite similar I think, although I have no nausea and absolutely nothing shows up on any test, rendering it a case of my own testimony being the only thing the doctors have to work on, so I can absolutely sympathise with them too. I’ve been symptom free from the most severe pain for well over a year, so I’m overdue a recurrence! I’ll keep checking up to see how you are doing, and also for more advice and strategies!

        Liked by 1 person

      2. I love making new friends who understand! I do sympathise with some doctors, only the ones who are genuinely concerned. Illness has opened my eyes to some shocking doctors! Having depression doesn’t help, as they automatically assume that it is mental rather than physical.
        I am so happy to hear that you have been symptom free. That gives me a bit of hope that maybe I won’t be this way forever. Enjoy every moment you can.

        Please stay in touch. I will do the same, I assure you. I’ll take another peek at your blog tomorrow and continue reading from where I left off. Goodnight! (:

        Liked by 2 people

  25. Love love love your posts- so glad I stumbled across your blog! This one is great- I have a lot of chronic autoimmune problems and getting other people to understand/not think it’s all in my head or isn’t as bad as I make it out to be is one of the worst things. Thanks for sharing your thoughts with the world and making it a little better for other sufferers out there!

    Liked by 1 person

  26. I hope it’s alright with you if I make a post that links back to your post about this….but gives my answers for these questions. It will give you total credit for What not to say…and link to what you have said, with many accolades.

    I really appreciate how many times you have been to my blog. I’m sorry I haven’t made it here sooner. have had so many rough months lately…has been hard to get around to other blogs.

    I love the way you write.
    thank you for being here.

    Liked by 2 people

      1. Thank you…..I’m working on my list. I think you will like the introduction.
        Had a very rough afternoon yesterday, so who knows how long it will get me to actually post anything. Vertigo….cluster headache…geez! Now today my brain is all over the place, I can’t stay focused…. like ….ummm…..what did I just say???
        and people really don’t get that.
        so what was I doing before I came here….no really…I was going to do something….

        Thanks again!!

        Liked by 1 person

  27. I found you from Wendy’s post on the same topic [Picnic with Ants] and just added a link here to the bottom of a year-old post I wrote on a similar topic, part of my languishing Monday Grumpy Monday Series: Top 10 Things NOT to Say (if you want to stay alive). Watch for pings.

    btw – I shuddered as I clicked “like” on comments on my way down here. What I LIKE is the bravery and the posting, not the details of the need to be brave in the first place. Hope that wasn’t misunderstood.

    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    “It takes a village to educate a world!”

    Like

  28. “A bad day is when you burn your toast, miss your train, get a flat tyre, spill coffee all over your white shirt, get gum on the bottom of your favourite shoe, etc.
    A bad day usually lasts one day, or a few days at maximum.
    This illness is not a bad day.
    It’s my EVERY day.”

    Yes! This! So much yes!

    Liked by 1 person

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