It can be difficult to know what to do or say to support someone who’s living with a chronic illness. That’s why I’ve put together a list of things you can do, and some information for you to understand, to do your best to help your loved one.
P.S, if you’re looking this up, and genuinely want to make them feel supported, you’re already making a great start 😊
1. Look up their conditions
It shows that you care. I always feel so supported when someone tells me they researched my condition, and they actually want to learn what I’m dealing with.
But, don’t take this research as an opportunity to act as though you know more about it than their lived experience.
Research what symptoms they live with, and what you should look out for in case they have an episode or flare up when you’re together (and what to do in that situation). Research the effect their condition can have on them. Research what they might have difficulties with, so that you can offer help.
It can also be useful to follow charities for their condition, as they often post useful awareness information, or creators online with the same conditions, to find out more!
2. They don’t want sympathy or for you to find a solution.
Ask what they need, but usually, they just want to vent and have someone listen to them. Chronic illnesses can be a lot to handle, both physically and mentally. So, it’s nice to know that someone is there to listen to what they’re going through.
3. Believe them and take them seriously.
Listen to them. If they say their pain is bad, it’s bad. If they say they need rest, they need it. If they say they can or can’t do something, believe them. People with chronic illnesses get dismissed constantly, and online stigmatisation has been highly prevalent recently. But, it hurts more coming from a loved one than a random doctor or stranger.
4. Keep checking in on them and ask questions.
Many people show a lot of support in the beginning, but this often fades as time goes on. Just because it’s been around for a long time, doesn’t mean that it’s any easier than the beginning. We’re still just as sick. New medication is still scary. Surgery number four is no easier than number one. We still leave hospital appointments upset from the lack of answers.
It means a lot when people stick around, especially when it can be difficult for us to be as involved as our able-bodied counterparts.
5. Don’t stop inviting them to stuff or assume what they can or can’t do.
Just ask, it’s really simple. Just because our illnesses can stop us from being there a lot of the time, doesn’t mean we want to be left out entirely.
Chronic illness is lonely. We often can’t spend as much time with the people we love as we’d like to, but we still miss them. You might feel that you’ve drifted apart because you rarely see each other, whilst they only get to see people so little that it feels like people have moved on.
6. Offer accessible options when making plans.
Ask what support or adjustments they might need and take these into account when deciding what to do or where to go. Research venue accessibility. It makes us feel a lot safer and more comfortable when you take us into consideration and want us to be able to be included fully.
7. Please don’t get us sick!
If you know that you’re ill, don’t come and see us. Even if you think it’s nothing or “just a cold”, we’d much rather reschedule. This also means telling us when you’ve been around someone who is sick. Many of us are already dealing with post-viral illnesses that can be worsened by another infection, or are immunocompromised and cannot handle an infection the same way that a healthy person can.
8. Our descriptions of sickness and pain are different to most people’s.
Our “tired” is deep exhaustion and fatigue. Our “it hurts” means it’s pretty bad for us to mention it. When the symptoms are always there, it only gets mentioned at it’s worst, otherwise we’d be talking about it all day and every day. If someone is complaining about their chronic illness symptoms, please do not respond with “same” as a healthy person. It is not the same.
9. Understand when they have to cancel.
Chronic illness is so unpredictable, and it upsets us when we have to change or cancel plans last minute. What you might see as an excuse, is a condition that constantly steals from us, taking another thing away.
10. Don’t force them to be positive.
To you, them talking a lot about their illness, especially in a negative context, may feel uncomfortable. But it’s nowhere near as uncomfortable as being told “you never know, be positive, you’ll get better soon!”.
This takes over their life, so it will be a big topic of conversation for them. It’s important that they accept the reality of their condition. We can’t put on rose-tinted glasses just because the idea of no cure makes you uncomfortable. It makes us uncomfortable too; we don’t want this.
11. Don’t make them feel guilty for resting.
We’re exhausted and need more rest than most people to function. For some of us, rest is one of the only things we have to stop us from getting permanently worse.
12. You will almost always only see us on our better days.
When you do see us, it’s on days where we felt well enough for social interaction, or to leave the house. These are the good days. Even then, we’re likely downplaying how bad we’re feeling so that we don’t make people feel uncomfortable. Good days don’t mean symptom free.
Thanks for reading! Follow my social media for more chronic illness related content and consider subscribing to my blog for updates when I post! 🙂
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