There are things I wish I could tell my family and friends, as well as my co-workers and my employer, but because it's often hard to talk to people about this, I will share them with all of you. Maybe you can keep them in mind next time you find out or see someone with a disability (though often disabilities are invisible and you wont realize someone has any problems).
Work- When I tell you, "I need to sit down" It really means I need to sit down NOW. I wait until I can't handle the pain anymore, trying to make it easier on you. When I mention I can't do a lot of running around, its because something is wrong and hurting and I'm sorry. I don't complain, or ask to sit down too much because I know you have a lot to deal with, with other employees. I push myself farther then I should already. I go home in pain every day. I come into work already hurting.
I never call into work because I just don't want to work, unlike some of the other employees you know about. If you ask me to do something, even if I know it will hurt me later or now, I do it because i know you need the help.
I love having a job, even if I have troubles working more then 25 hours. I feel bad for needing accommodations, but I don't have super limited accommodations to try and make it easier on you.
Family - I need you to understand that this disorder affects everyone differently. You may not deal with daily and constant pain, but I do. Please don't criticize me for seeing doctor to try and help me figure out what's happening to me. Also please don't try and make me feel bad when I have to resort to government programs to help me find a more suitable job for me.
I may be sick, but it doesn't mean I can't go to college someday. Please don't say things like "If you have such bad issues, I don't know how you will be able to go to school." Let me figure that out. Don't tell me things like "The special help wont always be available" and claim it as the "reality" of the economy. Note takers and other accommodations may not always be available, but saying things like that is almost as bad as telling someone they are stupid and shouldn't bother going to college.
Please don't compare me to you or other family members, it is different for all of us. And try and refrain from pushing me to try different things that have helped you, I might consider trying them, but I can't jump on doing them all. I can't work out like you do, telling me i need more exercise doesn't help, this isn't muscle fatigue, its tendons and ligaments and joints that hurt, I have to be careful.
Friends- I love you, often times you put up with more then my family does but I know you will never understand, all I can ask is for your patience.
Stranger- Yes I look normal, but I'm not, please be patient if I'm taking a bit longer to do something, I'm trying.
Everyone - I love life still. I deal with a lot of things that frustrate me and can sometimes make me sad, but I love life. Please don't pity me, no amount of pity parties can ever help me feel better. If I get upset with my body, it's okay to just let me be and not try and make me feel better. It's also okay to laugh with me, actually its preferred. I have a sense of humor about everything that helps keep me happy and not letting life get to me.