As a follow up to my other blogpost, 7 things teens with a chronic illness don't want to hear, I thought I'd write about the things that are helpful and supportive to say to someone with a chronic illness. These comments can actually make someone's day, no matter how insignificant they may seem.
Often with no visible injuries, we are left with a multitude of hidden symptoms which are easily, and regularly, dismissed by medical professionals, friends and family. When someone says to us 'we understand you are suffering', it can bring a relief that can cause a flood of tears. Just hearing those words can mean the world to us. Being told we are believed can ease a multitude of anxieties whirring around our heads.
2. "Is there anything I can do to help?"
We really don't like to ask for help. We will strive to be independent and do things for ourselves, unless we have no other choice. We have teams of medical professionals treating us and caring for us, so we don't need 'babying'. But in everyday life, even something as simple as asking if they want a glass of water when you stand up, means we don't have to exasperate symptoms, and we appreciate it so much.
3. "I understand if you have to cancel last minute. We will miss you but I will bring you some cake back from the party!"
It's really hard for us to cancel on people, no one likes to let other people down. We want to be there just as much as you want us to be there. But having a positive reaction from others can help us accept our reality without any more unnecessary guilt. Please remember that we are not the unreliable one. Our bodies are.
4. "I'm more than happy to chill in your room with you for a few hours! We don't have to go out to have a good time!"
As we aren't able to do typical social activities, like theme parks, parties, or shopping, we can often feel like our company is a little boring. We can't be high energy and enthustistic and funny all the time. We really, really, really appreciate that you come to visit, no matter the circumstances, but we do wonder if you get bored of simply being in our room all the time.
5. "Have you had enough for today? Do you need to rest for a bit?"
Please don't take this the wrong way. We absolutely love and value spending time with you. However, being social and active for hours can really take its toll on us. We would never ask you outright to leave, but sometimes we force ourselves to keep on going when really we just need to sleep. Checking in with us is really helpful. Pain flares after being with friends for a while can take a good few days to get over, so please don't be offended if you don't hear from us until we've woken up properly again!
It's really hard for us to cancel on people, no one likes to let other people down. We want to be there just as much as you want us to be there. But having a positive reaction from others can help us accept our reality without any more unnecessary guilt. Please remember that we are not the unreliable one. Our bodies are.
4. "I'm more than happy to chill in your room with you for a few hours! We don't have to go out to have a good time!"
As we aren't able to do typical social activities, like theme parks, parties, or shopping, we can often feel like our company is a little boring. We can't be high energy and enthustistic and funny all the time. We really, really, really appreciate that you come to visit, no matter the circumstances, but we do wonder if you get bored of simply being in our room all the time.
5. "Have you had enough for today? Do you need to rest for a bit?"
Please don't take this the wrong way. We absolutely love and value spending time with you. However, being social and active for hours can really take its toll on us. We would never ask you outright to leave, but sometimes we force ourselves to keep on going when really we just need to sleep. Checking in with us is really helpful. Pain flares after being with friends for a while can take a good few days to get over, so please don't be offended if you don't hear from us until we've woken up properly again!
6. "Your makeup and hair looks really good! How are you really feeling though?"
Saying 'your makeup looks great', as opposed to 'you look great!' (With a tone of surprise) can help us stop interpreting that as 'I don't actually believe you were that ill in the first place.' And it's so easy for us to dismiss this question with an 'I'm fine!' If we told you how we truly felt every time someone asked how we were, you wouldn't ever want to bring it up with us again! But giving us a chance to actually say that we don't feel our best, can help so much.
7. "I see how hard you're trying. I'm proud of you."
We give heartfelt apologies for when we are grumpy, snappy and down as a result of completing little tasks that cause huge spikes in pain and take up all our effort. When we huff and puff, it's not because we want to draw attention to the fact we're struggling. We aren't purposely stubborn because we want to defy you when you tell us to rest and we just carry on with whatever we're doing with a grimace. And we honestly don't want to come across in a 'please feel sorry for me' kind of way. We have adapted and learnt how to get through life, just as everyone else has. We want to make people proud, and we want to achieve things, just as you do. We internalise so much, nobody but the sufferer can fathom just how much. But a chronic illness is a full time job on top of everything else. And simply hearing that someone recognises the effort we put in to living daily life, can make it all worth it.
Leave me a comment down below if there's anything else people say that I've forgotten, that can make you feel more understood, and can turn your day around!
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