For the past 20 years or so, J has felt constantly tired, struggles to concentrate for long periods of time, and generally, his whole body aches with minimal exertion. This has got a lot worse over the past few years and, because he was often in bed at the weekends, I actually started this blog to have a hobby while he was sleeping!
He finally got diagnosed with Fibromyalgia a few years ago, and although some people are well-meaning when they find out about it, some of the things people have said are just thoughtless.
Here are ten things of the most common things people have said to me about J’s illness and things you definitely shouldn’t say to people with chronic illnesses or their families:
1. My friend/sister/cousin’s friend had that but they recovered after a couple of years – Well fucking whoop for them. As lovely as it is to hear someone you know has completely recovered, some people don’t ever recover or feel better. Don’t rub recovery in people’s faces, you’re not being helpful.
2. He still works so he can’t be *that* ill – If you’re familiar with chronic illness, you might have heard of the spoon theory, if not, let me explain. People with chronic illnesses get 15 metaphorical spoons a day and every single thing you do costs spoons. So, getting up and dressed could use up 3 spoons, eating breakfast uses 1 spoon and going to work uses 8 spoons (all the websites vary but you get the idea). Once you’ve used up your 15 spoons, you have no more spoons until the next day. Some people might use all their spoons getting up and going to work and just don’t have any spoons left when they get home. Some people can work when they have a chronic illness, some people can’t.
3. I’ve heard doctors think Fibromyalgia isn’t real, so isn’t he just being lazy? – Yes, that’s exactly what it is. He just doesn’t want to be able to follow a recipe or work on our house or be able to stay up for a whole day without having to go to bed because he feels so awful.
4. Surely it must be so hard on you having to do everything, how are you happy? – OMFG. What on earth would make you think this is okay to say out loud? Seriously, if this phrase wants to fall out of your mouth, kindly fuck off and when you get there, fuck off again.
5. I watched that show where someone was taking the piss out of chronic illnesses, have you seen it? – Erm no, I haven’t. Weirdly enough, living through it isn’t quite as funny as it might seem!
6. I read an article about chronic illnesses. Has he tried taking herbal supplements/cod liver oil/having specific tests for deficiencies? – I appreciate you’re trying to be helpful, but we’ve probably read the same information and already tried it or discussed it with a medical professional.
7. How would you cope if you had a child? – Actually, whether we choose to have children or not, is absolutely none of your business. End of.
8. Since he’s been with you, he’s stopped coming out – Yeah weirdly enough, we don’t go out anywhere either. It’s not like we’re sitting in a pub somewhere having a great time laughing at how you all think he’s ill, while actually, we’re having the best time in loads of fancy places.
9. What if he doesn’t have a chronic illness and he’s actually just depressed? – Thanks for your clinical input there Dr Dickhead, we didn’t think of that! He’s under the care of actual medical professionals and has an actual diagnosis.
10. Imagine how amazing it’ll be when he gets better though – The thing is, not everyone recovers from a chronic illness and you’ve now implied that his life won’t be great unless he recovers, you nob. I get what you’re trying to say, but it’s possible he’ll never get better.
Are you with someone who has a chronic illness? Are you the one with the illness? What do you wish people would stop saying to you? Let me know in the comments below 🙂 x
Ugh! It blows my mind the number of people who think things like this are ok to say. I’ve heard most of these and it really is rude and insensitive. I have to say, no.8 shocked me for several reasons. I can’t get my head round the fact that people would imply that you’re controlling, it’s utterly ridiculous. But I’m also really surprised that J’s friends don’t suggest activities that he’d be able to manage. All it takes is a “how about I pop round for 20 mins or so at the weekend?” That way J doesn’t have to waste energy travelling and they could still have a great time together, without wearing J out. It only takes a little effort on the friend’s part. Sending lots of love to you both! Xx
Tania | When Tania Talks
To be honest though, J just doesn’t reply to many of his friends anymore, too much effort to try and concentrate on keeping conversations going xx
I’m sorry you’ve had to endure such insensitive comments, and I really hope you and J get some answers soon (I mean real actual medical answers from people who know what they’re talking about!)
I have hypothyroid disease and try (mostly unsuccessfully) earn money from home so I can nap when I need to – the most insulting thing someone has said was to my husband, in front of me: ‘Imagine how much money you’d have if you didn’t have to support Helen.’ My brain didn’t think quick enough for a good come-back to that sadly, but I often think of suitable replies when I’m trying to get to sleep!
I hope we do, from proper medically qualified professionals 😀
OMG, what an awful thing to say to someone!!! x
Can’t remember if I shared this with you, (thank you fibro fog) but my favorite comeback in these situations is “and what cereal box did your medical degree fall out of ?”
Ahaha, love it!! I’ll have to remember that 😀 x
Hi Holly, amazing post!!
Fuck those people! I have ME too and have been housebound for three years now. I’ve managed to find things that really help though – I’ll link to a post I wrote on helping with the fatigue aspect (but obviously you don’t have to read it or reply – whenever I post something I get a lot of suggestions and it can be quite annoying!)
Part one is how the fatigue feels, so you might want to give that a miss, but parts 2-4 are all things I’ve found useful – http://superpooped.blogspot.co.uk/2017/04/me-symptoms-tips-fatigue-part-2.html?m=1
Thank you 🙂 I’ll definitely have read, thanks for the link 🙂 x
Holly I’m so sorry you’ve had put up with this kind of crap. I get things like this a lot (I have chronic pain and can’t work) but I get dumb questions from my own family! My brother saw me in my local supermarket once and said “so this pain thing, you say you’re in pain all the time, are you in pain now?” 🤦🏻♀️ I wanted to say “no it doesn’t happen when I’m in Waitrose…”
Thanks Lucy. Your reply made me laugh on the bus!! I’d be tempted to reply with “No, I’m not in pain on Thursday afternoons!”
Not long ago my mum asked me if I was still taking medication….honestly and they wonder why I don’t want to spend much time with them!!
Oh dear 🙁 My parents are super understanding and so are his.
I love this post because i hear weird, stupid reactions BUT my partner aswell ! Those reactions i dislike the most because it’s like they dare to speak out more when i’m not around.
Reactions to my partner:
1. Don’t you find it annoying that your wife is just home all the time ?
2. I don’t know how you cope with it. I couldn’t if i was you.
3. Oh. She couldn’t come along (again). Seems like she’s doing worse than this other person that we know. (Compairing stories ugh)
I hope you get enough supportive words from people around you than those negative useless words.
I’m rooting for you both !
Argh, number 2!! Of course you would “cope” with it!! Thank you for leaving a lovely message 🙂 xx
People are so rude these days! I have an illness that causes pain and I know people have said ‘how can you be in pain but still leave the house?’ It’s like back off, just because I’ve tweeted that I’m in pain doesn’t mean I can’t go to work! I feel for your boyfriend as it’s hard living with a chronic illness and you must feel exactly how my boyfriend does! At the end of the day you both know how he is day in and day out! But the replies did make me giggle! Great post
They are, but they also get offended when you call them out on it!! People just don’t understand how you can be a little more active one day and bedbound the next! I’m glad my replies made you laugh 🙂 x
I think I just pulled a muscle in my neck with how hard I was nodding along as I read this. People can be God damn idiots. I have Fibro, and though a good 99.9% of people are lovely, there are always the odd few who try and “offer a diagnosis”. It’s especially frustrating when people feel the need to send you the first link on Google that comes up when typing in “cure for *insert illness here*”. Best of it is, if it wasn’t a chronic illness and something that is more commonly known, no way would people say half the things the do. Most just treat it as a cold, or something insignificant. Blegh. You’re both troopers. Sending all my love. xx
Nooo, don’t pull a muscle lol!!
Sorry to hear that people are generally idiots to you as well. I know a lot are well-meaning, but I wish they’d just not bother, you know? xx
I can’t believe anyone would say #4 (well I can, people are jerks), being happy with someone is about who they are, whether they’re tired all the time because of illness, can’t do activity x because of illness or love music that you don’t!
It is an issue particularly with invisible illnesses; everyone is just milking it aren’t they? I had a blood clot last year and it still makes me get tired a lot or struggle doing any kind of exercise but it was a year ago so I must be ok right? It’s just an excuse when I don’t want to go out on an evening. If J was in a wheelchair it would be different because then there’s obviously something wrong with him.
I think the internet doesn’t help either (and I’m certain I’ve been guilty of this and will be guilty of it again) but there is so much info out there that we are all experts. The trouble is you don’t know which of it is right! And then you decide because you’ve read it 5 times that it must be right and you must pass on that knowledge.
Fingers crossed for you guys that a diagnosis can be obtained. Even if nothing can be done sometimes it’s nice just to have a name for what is affecting you 🙂
Exactly!! I love him, no matter what his energy levels are like!!
Yeah invisible illnesses are definitely worse because you can’t physically see what’s wrong; therefore, people jump to conclusions that the illness is being faked or they’re not as bad as they’re saying they are!!
Thank you so much for your kind words xx
My husband has MS and the one that gets me is when people try to prophesize how things will turn out for him based on the fact that they once met someone else with the same condition. It affects every sufferer in different ways and at different rates. That said, I haven’t experienced half the issues you have, possibly because he has a known condition rather than an undiagnosed one and possibly because some people don’t understand or recognise ME whereas MS is more well known.
It must still be really hard for you though. People have read one thing in a magazine or seen an interview on TV and suddenly they’re an expert!!
Wow. Wow. Wow. These things people have ACTUALLY said to you are so disgusting Holly what the heck?! Good for you for putting it out there. I get that some people don’t understand – but come on people, it just requires some common sense 😱
Yeah, I think people just don’t think at all. I get that there’s a lot of curiosity, but people don’t think before speaking xx
In all honesty a lot of people are rude and don’t think before they act/speak. If they stopped and thought whether they’d like to be told those things or asked those questions there would be more compassion. You don’t have to tread on eggshells 100% of the time but do be mindful of what you say and who you’re saying it to.
Exactly, if you think it would be rude if someone said it to you, perhaps don’t say it to someone else? Or at least ask if it’s okay to ask questions etc xx
My thoughts are with you and J, I can only imagine what it must be like living with a chronic illness. The spoon theory is a good metaphor to share and I’m sure that helps a lot of people understand. I can’t believe some of the inconsiderate things people have said to you both. I hope this post raises awareness xxx
Thanks Izzy. The spoon theory is so useful in helping people relate to what can be like having a chronic illness 🙂 xx
My partner is in a wheelchair, he broke his back, and people ask us these sorts of utterly stupid questions all the time. I have a chronic illness (currently under investigation) so I know exactly how hard it is to function at times, especially when you’re low or out of spoons.
I hope J gets a diagnosis soon, I know it makes a world of difference to know what the matter is and potentially how it can be treated/managed.
I’ll bet they do. It often starts with “I hope you don’t mind me saying, but….” STOP RIGHT THERE. I do mind! Don’t even go there!!
I hope you get a diagnosis soon too!! It definitely makes people’s perceptions change when you have a “label” xx
Ah ha ha, sorry I’m laughing as I have these things said to my face. You can’t be that sick, you look fine! Or when the waves of pain are ebbing and flowing so sometimes I’m grand to hang out and drink tea and chat – so I may not be fit for much else and therefore left work/cancelled plans, that doesn’t mean I can’t sit and drink tea and chat and the pain is relatively low. Raaaaaaaa. So annoying. Hooray for invisible chronic illnesses. I do hope they figure it out. Agree – declutter the people that are a pain in the ass
People are so lovely, aren’t they? Pretty sure they wouldn’t say it if it was something you could see, like a broken leg!!
I’m blind and people have said some pretty stupid things to me over the years, so I can believe that people do say these things to your face, and even worse think they’re saying something useful. I’m sorry you’ve had to hear them. Sometimes a declutter of so-called friends is the best thing!
I can only imagine to be honest!! I had a good de-clutter ages ago, it’s the best way forward 🙂 xx