What Not to Say to the Chronically Sick - Part 1

I want to preface this blog post by saying that I completely understand that the people that say these things are generally well meaning. Chronic illness is still somewhat of a taboo topic and there's no guidebook on how to best approach the subject (possible book idea maybe?)

I understand that you want to say something and that you want to acknowledge our struggles. But let's be honest, our struggles also make you feel a bit uncomfortable. The commencing conversation is often laden with phrases that don't necessarily translate over to chronic conditions in the same way they do a common cold.

Hopefully this blog post (and the rest in the series) will arm you with phrases to use instead of the more common ones that aren't particularly transferable to a chronic situation. I get it, you're scared of saying the wrong thing so often you'll either revert to what you know or you'll say nothing. And that's how people drift. It isn't through any ill will, we're just a bit of an awkward bunch aren't we? I hope this helps.

1 - Where there's a will there's a way

If you are able bodied please do not use a phrase like this aimed at someone who isn’t. If you genuinely believe this then you have a skewed perspective of what being disabled is like. For me anyway, it comes across as if you think I've not tried hard enough to find a way where X works. Sometimes it just doesn't.

Obviously sometimes there are situations that can be helpful to some people. For example, I dropped down to part time study and have managed to keep that going. That does not mean to say anyone that’s had to drop out of studying altogether is doing something wrong. It doesn’t mean they didn’t want it as much.

If it’s never occurred to you that a lot of situations and opportunities as well as physical spaces are not fully accessible then you’re coming at it from a position of privilege. There are some things I can’t do no matter how much I might like to. That is unfortunately how chronic illness generally works. You are made to give up things. Sometimes there is a certain way around disability, yes of course. But not always.

I’m sure I’m not alone in finding phrases like this rather belittling. Even though I know that was obviously not your intention. Sometimes things aren’t possible, and it doesn’t make me feel remotely better about it to be told ‘there will be a way around this’. There might be, but that doesn’t mean there will be.

Sometimes I'm in a shitty situation and there isn’t actually an alternative. The world isn’t balanced like that. There isn't that sort of access all the time. Sometimes there isn't a way no matter how much will I have. I know that thought is uncomfortable, and you don't want it to be truthful. But I'd much rather you were honest about it no matter how unfortunate it is, because that then allows me to be honest as well, and that's important.

I don’t want to be told I can do anything I put my mind to - we both know that’s not true. What I’d like is to be told that whatever it is I feel I can do in this moment is absolutely, unequivocally, enough.

Possible alternatives -

"I'm sorry your health has got in the way of X, I know how much it meant to you."

"I'm here if you want to talk about it."

"Is there anything I can do?"

"This is not your fault."

2 - There's light at the end of the tunnel

If you’re suffering from something yourself I totally understand if you want to focus on the light at the end. If that’s what you find helpful then that is absolutely up to you and in no way do I want to change your mind. This is more aimed at able-bodied friends/family aiming the phrase at people who are dealing with long term health issues that they are not.

For me, I’m not as focused on the light at the end because the tunnel is so very long. I’d rather focus on how I can make the most of it while in here, if that makes sense? This phrase to me feels a bit like pressure to reach the end and come out the other side. But the tunnel might well be my whole life.

I live with multiple chronic illnesses with no known cure and I already feel like I want to get better more so for my loved ones than for myself. For me, the light at the end is too far away to be of any use at lighting the immediate step in front of me. I’d much rather you joined me in here and lit a match. I’d rather you focus on bringing some light into the tunnel, rather than focusing on me reaching the light at the end.

If the only reason you can deal with me being in here is by focusing on me getting out then you’re maybe going about things wrong. Is it possible that you’re using that phrase because it helps you, and not necessarily because it’ll help me? Focusing on the end goal isn’t always helpful for everyone. Also maybe my version of an end goal isn’t the same as yours?

Focusing on being there for someone every step of the way is more important. Saying ‘everything will get better’ means less than saying ‘I’ll be here for you even if it doesn’t’. I’d rather have company in the tunnel and never get out than just have someone cheering me on from the entrance. You’re too far away I can barely hear you.

Possible alternatives -

"I'm really sorry things are rough right now, how can I help?"

"I know you're going through a shit time, but I'm here for you."

"You're not in this alone."

3 - You're looking well

First off, I understand that this is fully intended as a compliment. However I see a few issues with it from the perspective of someone with an invisible illness. I don't know if this phrase is perhaps generational because personally I've never had anyone say it to me under the age of let's say 40. I understand that generally "looking well" means "looking good" but when you're aiming it at someone who's chronically ill it takes on a whole new meaning.

We both know I'm not well. I'm genuinely sorry if that makes you feel uncomfortable, but I don't see any point in skirting around the subject. I'm sick, have been for ages, will probably be for ages. You don't have to feel like you need to avoid that in front of me. We know I'm not well, so saying that I look it doesn't really mean anything anymore. I know you're not trying to be dismissive of my problems, but it just seems to me like a bit of an odd phrase in this context.

I know that I can put on makeup and fake tan, wash my hair, put on clothes that aren't 3-day-old pyjamas and look "well". I know that I look fine when I'm like this. But if anything - that's an issue, not necessarily something to be celebrated.

What does "looking well" mean? What does health look like? As a society we still live under the assumption that sickness looks like one thing, and health looks like another. But actually sickness can look like anything, it can look like anyone. And therein lies the problem. Phrases like this one perpetuate the idea that you have to look a certain way to be healthy or to be sick. But actually what I look like has absolutely nothing to do with it. I know that you know that, you've just not connected that idea to this particular phrase before.

On another note, who's to say that looking unwell is inherently a bad thing. What about people that look obviously disabled? You can look nice even when you don't look well. I think we need to stop using these two words as synonyms for each other. As I've said before, I know "looking well" is intended as a compliment, but its based on age-old evolutionary psychology which isn't necessarily relevant.

Back in the dawn of man good health was seen as a desired trait for mating, and still is throughout the animal kingdom. But we know here that those of us that aren't blessed with good health are still very much deserving of courtship and love. Many of us don't look well, but that shouldn't matter. You can look well but be sick, you can look sick but look nice. If I put on some eyeliner and wear my best jeans, I'm not trying to look well. I'm trying to look nice. There's a distinction there.

Possible alternatives -

"You look nice." - I know this seems boring and too simple but honestly just go with it.

"You suit that colour."

I hope this was helpful, and hopefully put across a perspective you maybe hadn't thought of before. I have a lot of ideas of further examples, so if you liked this post - there's plenty more to come.