1. Invisible illness is by definition, invisible meaning nobody can tell that something is wrong just by looking at you. People are going to assume you are just fine, you can change that assumption, it’s up to you, but no one will know unless you say something. I made the mistake of assuming several people knew about my health problems because of some of my erratic behavior. They just thought I was being a flake, they had no idea there was a reason for my behavior and this led to some major understandings. I wish I had been more clear about my physical capabilities in the beginning.
2. You are going to have times when you are very angry because of the way somebody treated you with regards to your illness. It’s okay to be angry with people who don’t understand, but don’t hold onto your anger and don’t take it out on them. They don’t know any better.
3. Not all invisible illnesses are equal. There is a lot more acceptance of illnesses like arthritis, diabetes, or lupus versus fibromyalgia, chronic fatigue, or any mental illness. Mental illnesses especially carries a stigma that people many can’t begin to understand (or won’t admit to), as I talked about here. When my health problems come up is casual conversation I usually just say I have arthritis because people can relate to that. If they are interested in hearing more I will talk about how my arthritis was caused by Lyme disease and that I have fibromyalgia as well, but usually people are satisfied with the arthritis answer.
4. Sometimes you just have to look how you feel, like crap. Most people who see me think I look just fine because I make a huge effort to do my hair and put makeup on whenever I am in public. It’s the whole, fake it till you make it principle. Every once in a while I start to feel like I can’t fake it anymore and I don’t have the energy to pretend I’m healthy. On the rare occasion that people see me in my sweatpants with no makeup looking like death warmed over, they’re usually figure out that things are not good. Because it’s weird for me to have an outward sign of illness, when there is one it equates to a neon sign flashing “I need help, I need help now!”
5. There are lots of other people out their with invisible illnesses, you are not alone. Invisible illnesses can include: Fibromyalgia, Lyme Disease, Lupus, Mental Illness, Arthritis, and chronic pain, and this is just a short list. There are other people out there who will understand you because they have an invisible illness too. Finding someone who knows what you are going through is a huge help. Sometimes you just need to talk so someone who knows and doesn’t need long explanations to understand.