There are lots of things that you should try not to say to those with chronic illnesses such as ‘just try not to focus on it,’ ‘you look so well, you must be feeling better,’ ‘I wish I had time to take a nap,’ ‘just push through it and you’ll be fine,’ I could go on…! But I thought it might be more constructive to let you know what we would like you to say to us.
‘You look well. But how are you actually feeling?’
I find it incredibly difficult to respond to comments like ‘you look well’ when I am feeling so poorly on the inside. I end up trying to justify why I look well by saying things like ‘make up is a great mask’ or making a joke – ‘I actually showered today!’ It would be lovely if others could understand that just because we look normal and healthy on the outside, it does not mean that we are healthy on the inside. We have invisible illnesses after all. It would be a big relief to be asked how we are really feeling despite our appearances.
I’ll leave after an hour so that you can rest, or tell me to leave sooner if you’re tired.
Our bodies often tell us that we need to rest when we have visitors after a short time as even talking/listening is exhausting. We really don’t like letting friends and family down so we often don’t say anything. It would be great to know you’re aware of our limitations so that we feel comfortable to be honest when we’ve had enough. I am very lucky as I have very understanding friends who always say they will leave the moment I get too tired
Don’t feel bad if you have to cancel our plans at the last minute. I will understand.
I used to feel a tremendous amount of guilt when I cancelled plans with friends and family. It would end up making me ill because I’d be very stressed and get myself worked up about it. I’m much better now but I still feel bad about it. Knowing our friends won’t be angry or upset if we cancel really takes the pressure off.
I’ll pop over when it’s a good time for you
Popping over when you’re free probably means that it won’t be a convenient time for those that are chronically ill. After a certain point in the day we are often too tired for visitors, so try and fit around us if you can. There are only small windows in the day that we are able to have visitors unfortunately.
I understand that you needed some time out
How a person with a chronic illness feels changes from day to day. Some days we are well enough to go out for an hour, and other days we are completely bed bound. When we are particularly poorly, we sometimes shut others out and don’t really talk to others for a few days. It’s our way of coping. This isn’t personal to you at all, we just don’t want to talk as we feel so poorly or sad. Letting us know you understand means we don’t the additional worry that you are cross with us.
I know how hard you’re trying/you’re doing so well
Its always nice when others recognise your hard work! However, most people don’t see how hard work it is making it through the day when you suffer from a chronic debilitating illness. I work really hard just to write a blog post or do a spot of baking for example, and encouragement from others can be the motivation to help me get through it.
It must be really hard
We don’t really like talking about our illnesses, but when we do please let us know that you’re trying to understand how much pain we are in, how tired we are etc. We have so many symptoms all day everyday that we don’t even mention. For us to talk to you about it means we are really are having a bad day with the symptoms.
I love that you’re using your spoons on chatting to me
For you, simply chatting/catching up with friends/family is something you don’t think twice about. But for us, we have to plan when we can do this. And if we’ve managed to have a phone conversation with you for half an hour or you’ve popped over for a short visit, that probably means we can’t do much else for the rest of the day, or we will need a long rest after to recover. It would be so lovely if you could understand that we have such limited energy and we chose to use it on you. It should make you feel good that someone with a chronic illness chooses to spend their limited energy with you, because it means they care about you and enjoy your company!
If all else fails, give us a cuddle