Living with an invisible illness means frequent accusations of faking, exaggerating, and laziness. So how can abled people help those with invisible illnesses feel validated?
1. What are you up to doing?
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’m lazy. What I really wish is that people would just ask me questions about what I’m up for. 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’m not expecting 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 mumble, “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 burdensome so I’m not going to 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
Invisible illness is grueling. 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 bed in the morning, and yet no one acknowledges that sick people do it every single day. It makes 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 will never believe you, pharmacists are judging you, friends think you’re depressed, and family members don’t understand why you can’t just get over it. The single most important thing you can say to someone with an invisible illness is “I know your illness is real, I believe you.”
Thank you again for your last two posts. Having a bad flare day today and feeling sorry for myself and also feeling very lonely. Your posts always help me to know that there is someone out there that cares and understands. I love my family and friends but they just don't get it sometimes or most of the time for that matter. They always think a few good days means everything is all better with me and I can't handle the looks and comments when the bad days come. Just makes the flare days worse when no one understands. I think I'll print your blogs out and keep them with me to hand out to people. Maybe then they'll understand that it's not just me, that there are others out there who are feeling the same way I am. Thank you for blogging and trying to help people understand.
Thank you so much for you comment, it made my day! I've been feeling sorry for myself lately too, so you are not alone.