What (not) to say to someone with chronic illlness

This is a hard post to write. It might be a hard post to read. It might offend, it might confuse. And honestly, if it does either, I'm not really sorry at all.

I've had a couple brave friends confess to me lately that sometimes when I talk about my health (either in person or online), sometimes they don't know what to say. That they feel bad for what I'm going through and want to support me, but don't know how to do that, or what I need.

It's hard to talk to people who are chronically ill if you haven't experienced it yourself. (I won't speak for anyone with a terminal illness, as I very thankfully haven't had to go down that road myself). But it's not impossible. All you need is an open mind, and the willingness to throw away your assumptions or beliefs about what they are experiencing.

Before trying to explain what to say, I want to go through some basics on what not to say.

What not to say

I don't like to censor myself, and so I don't really like to censor other people. I think that speaking honestly can lead to really interesting conversations, and learning a lot. So by all means, if you really want to say something, then go for it! Just be prepared for any and all reactions and outcomes.

That said, here are some things that are just completely irritating:

"[Practitioner or type of treatment] would really help you." And especially, "It helped me so much with [minor illness]."

I know this is so well-meaning, and I am always glad to hear that someone has found a practitioner or type of treatment that helps them. It's wonderful really. But that doesn't mean it will work for everyone. Not just that, but when someone's been living with chronic illness for decades, is pretty proactive, and is not doing a particular type of treatment, it's possible they tried it. That it didn't help. That it even made things worse. And that's okay, not everything has to work for everyone! 

A little more kale, or a little more exercise isn't always possible or helpful. You don't know who it's going to be healing for, and who it's going to be harmful for. But I'd bet the person you're about to make the suggestion to knows exactly how it is for themselves. Because they live with themselves every single day. Making a statement like this sets the person with the illness up for a potentially awkward situation where they have to deny your helpful suggestion and enthusiasm (or else pretend it is new information to them). When they deal with comments like this on a weekly (or more often) basis, it can get really frustrating and tiring, and harder to respond gratiously.

A better way to approach this kind of conversation is: "Have you ever tried [type of treatment]?" This gives a the chance to tell you, "yes I have and it did or didn't work for me", or "No I didn't and I'd either like to hear more, or am already occupied with a different approach right now (or am taking a break from pursuing treatments)". Never press the matter.

Of course if you are a very close friend or family member, who is pretty up to date on what's going on, I'm always happy to hear what you're thinking, or have you pass on something you read and thought was interesting. But if you don't know a lot about what's going on, it's always best not to assume. It's best to ask and listen rather than tell and prescribe.

"It's pretty obvious that you're just stressed."

Ahhh, luckily something I don't hear often these days, but it has been said. Yes, sometimes I'm stressed. It can be stressful dealing with feeling awful on a daily basis, having to modify your life, your dreams, your relationships because of it. Being isolated, losing friends, worrying about the future. It was stressful dealing with this as a child, a teenager, a university student, and now as an adult. But it's also something that is my normal now, something that I'm used to dealing with.

Stress does exacerbate most chronic illnesses, it may even cause some of them. But that doesn't make them any less real. It's a chicken or the egg question, did the stress cause the illness, or just exacerbate it. Either way, the illness is real, not just "in their head", not just something that they can think their way out of.

And don't assume everyone who is sick is miserable. Despite having some bad days where I feel super frustrated and hopeless, those are maybe less than 5%. 95%+ of my days, I'm actually pretty content, and hopeful, and do okay with coping with what's going on. But you know what causes stress? Being judged, and made to feel like you're causing your own illness. Statements like this are completely unhelpful, and frankly insulting.

"You look great!"

99% of the time, no, no, no. Unless you know for a fact that the person has put a lot of effort into dressing up for a special event, where they want to hear that they look great, just no. But it's a compliment! No. No. No. I can't say it enough times, no.

When someone has been very sick for a very long time, and looks as they usually do (ie. have not "dressed up"), you may think that you're paying them a compliment by complimenting their appearance. And yes, some people may be able to take this as a compliment. But most - yes, really most, I've talked to so many other chronically ill people about this and it's pretty darned consistent - people will feel like there is an unspoken second half to this sentence:

"You look great, actually you look so good that I can't believe you're as sick as you say you are." Not said with sarcasm. It feels like the person saying it no longer believes you are as sick as you are because you look "good". I've written a whole other post about this, so for more please go read my post about beauty and chronic/invisible illness. Hearing you look good when you feel like crap feels like minimizing and dismissing the reality of the situation. Looks are barely relevant when you're no longer able to live the life you want because you're too sick, and hearing "but you look good" is like a stab right in the heart.

"You just need to focus on the positive."

Other permutations of this might be, "Just visualize being well.", "Just think positively.", and
"[Any statement related to the law of attraction.]"

Again, good intentions, but there are two things that are wrong with this.

Firstly, like above, it places the blame on the person who is sick, as in they are not thinking "right" and that is why they are sick. If only they would just change their mentality, they'd would magically be healed. In fact, that's why they're still sick, they just haven't tried hard enough to be positive. Just think of the implication this has to someone who developed an illness as a child. Were they to blame even then? Were they just thinking too negatively at their young age, while they lived with pain and discomfort? Surely not. 

Secondly, this is a way of denying a person's experience of what they're going through. It's fine if you're not comfortable hearing about someone dealing with illness. Be honest and assertive and tell them that, whether you want to understand more, or you'd rather not hear about it. But that is your problem, not theirs. I'm sure they'll respect your wishes not to hear more about it.

When you're on the receiving end of this, it feels like, "I don't want to know about what you're going through unless you can put a non-threatening and positive spin on it, so that I don't have to feel awkward or sorry for you." Censoring someone who is experiencing a challenging and possibly lifelong illness because it makes you uncomfortable is not okay. If they want to express themselves, and that's a way they cope with what's going on, then who are you to tell them otherwise? Remove yourself from the situation if you have to, and have some respect for the fact that what they are dealing with is challenging.

Sure, trying to stay positive is great and helpful. But being sick, especially for an extended amount of time is really hard. And if you haven't experienced it yourself, then no, you probably don't understand. If you can admit that, you're probably off to a great start in supporting them.

Remember, some people might look fine when you see them on occasion or just online, but that doesn't really have any relation to what they're living with on a day to day basis. Sometimes focusing on other things really isn't an option. When days and weeks revolve around medications, supplements, food preparation, doctors' appointments, counselling appointments, trips to the pharmacist, to the massage therapy clinic, to the testing clinic for yet another blood test, sometimes that's all there is. When you're extremely unwell, that's not a distraction from "real life", it is real life. There's not always the option to do anything else. 

I know I can't expect everyone to get that. I can't expect everyone to have empathy for it. But I can expect that those who don't get it, and can't empathize, to keep their opinions to themselves. Just like I wouldn't want to hear, "Just visualize you're rich" if I was broke, I don't want to hear "Just visualize you're well" when I'm sick. Sometimes you're dealt a hand that sucks, and you can do everything in your power to change the situation and maybe it will change, but the reality is that it's just not that simple or easy.

What to say

Ok, now that we've covered what irritates the hell out of me, here's what to say.

"I don't know what to say, but I'm here."

Too simple? No! It's honest. If you want to someone to know that you're listening and care about them, but you don't know how to help or what to say, just leave it at that. Don't expect them to offer up suggestions (though they might), because they might frankly not have the energy, and you can't expect them to take care of you when they're already dealing with a lot. Most likely, you'll get a thank you, and they'll feel a little more supported.

"<3", "*hugs*", or any other short but supportive or loving comment will also do here. You're not expected to do or say the "right" thing, there's probably nothing you can really do other than display your support.

"Would you be up for some company?"

If you're not freaked out by what's going on, or even if you are but you're willing to work through it, offer up your best gift: your company. I like this better than, "Let me know what I can do", because in most cases there's really nothing you can do.

If your friend is sick and doesn't get out much, I'd bet they'd love to see you. Take a risk, and invite yourself over (just be open to the possibility they're not up for it and will say "thanks but not now"). What? Invite myself over to a sick person's house?? Yes. Because it's likely they're not up for going out, and even more likely that they're feeling a complex mix of emotions that stops them from inviting you over themself.

If someone is extremely ill, like bedridden, and particularly if they live by themselves, then by all means offer help in as specific a fashion as possible (eg. "Can I pick you up anything?" or "Can I help you with some chores?"). If they live with a spouse or partner, then better yet offer the partner your help, because it's quite likely that they are the one bearing the weight of all that needs to be done.

Be willing to visit for a short time if that's all that the person is up for, and be willing to see them far from their best. Be open to the idea of spending time together that is extremely low key, maybe watching a movie together or reading books together. Being sick is extremely tiring, and sometimes the very idea of socializing is too much. But companionship is great, and if you're the kind of person who can handle that level of vulnerability and maybe even a bit of discomfort, then offer it up, because it's extremely rare, and extremely precious.

I've been so greatful for the few friends who've invited themselves into this part of my life, and been willing to not know how to do it. I don't really know how to do it either, but it's great knowing that some people care enough to not know and get through it together.

"Can I ask you about [thing you're curious about]?"

If you don't understand some aspects of what a friend or loved one is going through, and you'd like to know more, then by golly, ask! So many people are so scared to actually bring up what's going on. Don't be afraid - if they really don't want to talk about it, they'll say so. But chances are that they'll actually be happy that you care enough to ask, and that opening up more about what's going on will bring you closer together.

"[Banter about normal topics or talk about what's going on with you!]"

As much as it's great for people to broach the topic with genuine care and interest, the last thing you want to do when you're feeling crap all the time is focus even more on it. So, tell them what's going on with you, don't hold back. Ask for advice, or support with something you've been going through. This person still cares about you, and it'll make them feel like they're still important and useful if they can provide emotional support back to you. Tell them about a great book you read, or a great movie you watched, or what you want to grow in your garden this summer. Treat them like they're still that person they've always been, because that's one of the best ways to feel like one's self again; normal again. Like maybe one day things really will be okay, and this will all be in the past.

Do you have any "What to say" or "What not to say" examples to add? Post em!

Comments

Thank you - just thank you - difficult stuff to put into words and you nailed it!

I've found my self considering this post many times in the past few weeks, as I've talked to friends with several different varieties of long-term illnesses. It's so cogent, and useful, and heartfelt. Thanks for laying it all out there.

That's great to hear Travis, I'm so happy to know that my laying it out there does some kind of good! Also, just learned a new word - had to look up "cogent". ;)

You said it all, and said it well. As someone who also lives with chronic illness, I've heard all these myself, plus a few more (my favourite pet peeve is "But you look so good!" - as if maybe I'm just mistaken about why I spent seven weeks in the hospital last year, and can't eat normal food without the fear of having to go to the ER with a blockage or obstruction. No, you can't SEE my illness, but I assure you, it's there. Anyway, thank you for speaking the truth.

Hi Barbara - Invisible illness is really its own bizarre kind of social challenge. People just don't think about what they're saying sometimes... It's hard to know how to react in the moment - when someone is telling me I don't need to gain weight (when I was even more underweight than I am now), or saying my cheeks look rosy and healthy (when they're actually pink from being rashy). I think that's part of the shame and awkwardness that goes with it - correcting peoples' misjudgments is socially difficult in its own right. I think maybe it's a good lesson overall to actually take people at their word rather than think a quick visual assessment is more accurate than their lived experience!

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