I have a chronic disease that has a significant impact on my functioning. I get a lot of remarks about that thrown to my head. I’m sure that’s why many people with chronic illnesses are reserved to be open about what’s going on with them.
I myself think that this is a task for me, because only by communicating clearly can I change the image of my surroundings. That’s why I’m open about it in the things I write on the internet. Sometimes it’s just right for the environment to say something, even if it’s not very understanding. That’s the only way I can turn such a thought around or tell you what it’s really like. My opinion is that I have to teach my environment how to deal with me.
Intention is good
I soon notice when someone is really interested or when someone asks critical questions in order to refute my claims. It sounds like: ‘How does that work for you?’ Very different from: ‘Why are you lying in bed again?’
I often notice that the intention of my environment is good. They want me to be okay and to be able to do more than I can at the moment. Sometimes it just comes out a bit unhappy. A disappointment when I can’t come to a birthday, for example, I understand. I see that as a sign that people like me. I don’t understand anger or even incomprehension about not being able to come. It’s what it is…
Interested by questions
Try to ask questions with interest and don’t be disappointed if the question can’t be answered at that moment, because there’s no energy for that. Sometimes it is better to listen for a while and really take what they say to you. Can you imagine what it’s like for them? Or not? You can say that you find it hard to imagine what it must be like. That’s better than: “oh, that bothers me sometimes”.
Advice and tips
Advice and tips can also go both ways. Advice from someone I know well can be worth its weight in gold: I remember that two years ago you had far fewer appointments and I had the feeling that your complaints were also much better then’. Sometimes it reminds me that I do indeed have to take better care of myself and make fewer appointments.
Advice in the sense of: ‘You should try that, and that, and that…’ and being disappointed if you don’t want to try that, are of course less fun. People with a chronic illness often immerse themselves in themselves and their functioning. Nobody wants to sit at home sick, right? People with a chronic illness also want to be in the middle of life. So they have often found out for themselves what does and does not work. Sometimes it is better to leave the situation for what it is than to keep fighting with new treatments. Support the chronically ill person in the phase in which he/she is at that moment.
To prevent miscommunication in this area, you can open with the question: ‘Can I give you a tip?’. Then you know whether they are open to it.
I myself like to know that there are people who can help me if necessary. I will seldom make use of it. An example: When I’m in bed with migraine, I can’t stand it when someone is doing the dishes, for example. And if I don’t have a migraine anymore, I choose to do it myself. In short, don’t be disappointed if someone rejects your help or doesn’t respond to it. Of course you can always offer it.
So what do you do?
A small gesture can have a big effect. Knowing that someone is thinking about you while you are in bed with a lot of pain can give your day a positive turn. A chat message, a text message, or a card with statements that are not judgmental. At least that’s my experience and I like to share it.