People make a lot of assumptions about me. If they know about my illness they assume I’m useless, if they don’t know about my illness they think I am lazy. What I really wish is that people would just ask me questions. I know you can’t tell from just looking at me how I’m feeling and I really don’t want to wear a sign around my neck. I don’t expect you to be a mind reader, so please just ask. It’s less rude than making assumptions.
2. What can I do to help?
If you see me struggling with something, just offer to help. It’s really hard for me to ask for help because I feel like a burden, but if you offer sincerely I will take you up on it. Don’t just vaguely say, “let me know if you need anything” because I’m never going to follow up on that. Yes, it’s really my responsibility to ask for help and I’m working on that, but sometimes I don’t want to feel like a burden some I’m not going ask.
3. I care about you
Sometimes it can be hard to know what to say to someone who is suffering. Unfortunately platitudes are not very helpful to someone who is hurting. What is important is that they know you care, even if you don’t have the right words or the ability to make things better. Just let me know that you are thinking of me, and you know that I’m dealing with something difficult.
4. It’s okay if you’re having a hard time
Chronic illness is hard. It takes a lot out of you and it beats you down and yet sick people are expected to pretend like everything is okay and it’s exhausting. It takes ten times more effort for a sick person to physically get out of the bed in the morning, and yet no one acknowledges that sick people do it every single day. It can make all the difference in the world for someone to acknowledge that they see you and how hard you are trying.
5. I believe you
When you have an invisible illness you are constantly doubted. Doctors don’t believe you, pharmacists judge you, friends think you’re just depressed, family members don’t understand why you can’t just get over it. The single most important thing you can say to someone with invisible illness is “I know your illness is real, I believe you.”