I found the following list on http://shop.cafepress.com/invisibleillness. I LOVE this because it's so true!
I would add two of my own - pull yourself up by your bootstraps and quit feeling sorry for yourself.
I have fibromyalgia. I am not lazy. I do not need to get out more, to exercise, a more positive attitude, or a nap, and it is not nice to not have to go to work. I would love to get out more, to exercise, to be more positive, to be less depressed, to need less rest. I already know there are people who are worse off than me and that I'm getting older. This may or may not pass, depending on whether they find a cure.
I am a spoonie. If you haven't heard of the spoon theory of chronic illness, it goes something like this. Every morning, you are given a certain number of spoons which represent the amount of energy you will have that day. Every thing that you decide to do costs a certain number of spoons and when you have given away all of your spoons, you have to stop. Some days, you get more spoons than others.
I have noticed recently that I get exhausted after doing just one or two (or just a few) things around the house. Justin thinks it's because I've been inactive for so long and I am sure there is some truth to that. But this exhaustion goes beyond just feeling tired because I've overdone it. This feels like the worst flu you ever had and started to recover from - except you never got better. It's that bone deep feeling of being unable to move. And this is getting worse with time, for whatever reason.
I am not a pessimist. I am a realist who has been sick for over 25 years.
I have a great doctor who understands my symptoms and takes care of me. I trust his advice. This is a chronic, debilitating, exhausting, depressing illness that has no cure. My doctor is an expert. If you haven't been to medical school, you are not and your advice is probably only going to make me feel guilty.
I have not given up. I am still getting out of bed every day. I am still thinking I might be able to do something with my writing. I still have a sense of humor and laugh at silly things my friends post on Facebook or say in their blogs. I still save my spoons to do the things I want to do and push myself harder than my body says I should. It's hard to listen to your body when it is making you feel like the laziest person on the planet.
I have fibromyalgia, but it does not have me. It cannot take my spirit or my heart. And it cannot take my hope that they will find a cure in my lifetime. Nothing would make me happier. I do not want to be like this. This is how I have adjusted to be able to live my life.
This list can apply to any other chronic, debilitating illness that anyone is dealing with. Sometimes I think it would be better to have a visible illness, rather than an invisible illness because when people can see your disability, they are less likely to say any of the things on that list. You'd never tell a person with an illness you can see that they are depressed or that they need to get out more. But because I look "fine," it seems to be an invitation for any or all of the above statements. And those statements make me feel worse than I feel already.
I'd like to come up with a list of things that it's okay to say. But I'm not exactly sure what that list would include. Has anyone ever said anything to you that was actually helpful?
Gentle hugs to my chronically ill friends,