If you follow me avidly on social media, or we’re proper real-life friends, you might know that for the past 20 years or so, J has an undiagnosed chronic illness that shares a lot of symptoms with ME and fibromyalgia. He’s constantly tired, he 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!
We’re currently waiting on a rheumatology appointment to have some really detailed blood tests done to rule out some things and potentially finally get a diagnosis, although I’m not holding my breath.
This is a bit of a rage post to be honest, because I’ve had a lot of these comments said to me over the past few years, but especially more recently and you know what, it really, really fucks me off. Some people are well-meaning and I get that, but some people are just outright dicks.
So here goes, if you want to be super helpful when you hear someone’s partner has a chronic illness, for the love of Christ, try NOT saying ANY of these oh-so-delightful phrases!!
- My friend/sister/cousin’s baby’s friend had that but a couple of years later, they were completely fine – Well fucking whoop for them. I don’t want to hear that someone you know has completely recovered while my boyfriend is still in the grips of whatever the hell this is! It’s not something to aspire to, it’s rubbing our faces in it!
- But he still goes to work, he can’t be *that* ill – If you’re familiar with chronic illness, you might have heard of the spoon theory, if not, hear goes; people with chronic illness get 15 metaphorical spoons a day and every task you do costs spoons. So, getting up and dressed could be 3 spoons, eating breakfast is 1 spoon, going to work is 8 spoons etc (all the websites vary but you get the idea). Once you’ve used all your 15 spoons doing tasks, you have no more spoons for anything else until the next day. Essentially J uses all his spoons getting up, going to work and getting home, so has no more spoons at the end of the day for any other activities.
- Don’t doctors think Fibromyalgia doesn’t exist? He’s just being a typical lazy man – Yeah, 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.
- But surely you can’t be happy being with him? It must be awful for you – OMFG. What on earth would make you think this is okay to say out loud? If this phrase wants to fall out of your mouth in front of me, do kindly fuck off and when you get there, fuck off again. Our life together might not be exactly as we’d planned in the beginning, but yes, I’m happy.
- I watched such a funny comedy show where the comedian was ripping out of people with ME, have you seen it? – Erm no, I haven’t. Weirdly enough, living through it isn’t quite as funny as someone who has no idea about it taking the piss. And yes, someone actually said this to me.
- I read about ME/fibromyalgia in a magazine. Has he tried taking herbal supplements/cod liver oil/having specific tests for deficiencies? – Yes, if it exists, he’s probably tried it and nothing has changed. I appreciate you’re trying to be helpful, but we’ve probably read the same info and have already been there. Plus if you’re not a qualified medical professional, do kindly stfu!
- What about children though? How would you both cope having a child if he’s that ill? – Actually, whether we choose to have children or not, despite his illness, is absolutely none of your business. End of.
- How come he never comes out anymore? 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 living it up! I appreciate you miss your friend, but comments like these are actually really hurtful. Plus what you’re doing is really implying that I don’t “let” him go out, which makes you sound like a twat and me sound like some sort of possessive weirdo. If you say this to me, we’re not actually friends.
- Maybe he’s just depressed? – Thanks for your clinical input there Dr Dickhead. Maybe your amateur psychological opinion isn’t particularly welcome?
- Imagine how amazing it’ll be when he gets better though – Thing is, it’s a little hard to imagine when we don’t know what’s wrong. Plus, he may never get better and you’ve now implied that our lives obviously aren’t that great at the moment, thanks a bunch. You nob. I get what you’re trying to say, but imagine if he never gets 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