What You Should (and Shouldn't) Do When You Find Out About My Illness

Ever since I’ve been having problems with my health, I’ve had problems with people. Some people think it’s OK to tell me what they think I should be doing, and that’s not OK. Unless you’re my doctor, specialist, or me – you don’t actually get a say. In the end, I’m my own best advocate.

I know that people tell me these things with good intentions. What bothers me is when I tell them how I feel about it, yet they continue to do it anyway. It makes me wonder, “Do you even listen to me?”

The biggest misconception some people have about me is that by being realistic I’m being negative, or not positive enough. Some people don’t understand that being realistic is in my own best interest. If I’m not realistic about myself or my limitations, I run the risk of pushing myself too hard and paying for it later. I’m still trying to figure out what my limitations are, and that will be an ongoing process.

People with chronic illnesses lose friends all the time. It usually happens when friends take things too personally…because they don’t understand. Sometimes no matter what you say, they’ll never understand. They might tell you they care about you, but then they’ll complain when you tell them what’s actually going on. Sometimes your reality isn’t positive enough for them.

They might make you feel guilty for not making time for them, when that’s simply something you can’t do. They might also make you feel guilty for having a good day and enjoying yourself – when that’s simply something you don’t get enough of.

When I was diagnosed, my doctor said to me, “Make sure you cut out the people from your life who aren’t supportive of you.” For him to say that to me, this sort of thing must happen a lot to people with chronic illnesses.

I was lucky when I explained things to my family. They sat down and really listened to me. They asked me questions so they could better understand. I am lucky my parents were able to do that. Unfortunately not everybody in my life will.

I’ve been doing everything in my power to live my life as best I can with the cards I’ve been dealt with. Some people don’t think it’s good enough. Those people clearly don’t understand.

No, I can’t find a job easily like healthy people can. I can’t get through a few hours as a waitress without almost toppling over and two days recovery time. Don’t you dare judge me if I’m not working as much as you think I should.

Yes, I can still enjoy my life. I can still have fun. Don’t you dare judge me for trying to enjoy myself when I finally can.

I can’t live my life the way healthy people do. That’s my reality here…take it or leave it. It’s not negative, it’s the truth. Fibromyalgia can and will affect every aspect of my life.

I’m not sorry for being honest. I’m not sorry for being the way I am. I’m not sorry that my life isn’t positive enough for you. I’m not sorry if you can’t deal with my reality.

Please ask me how I’m going, but don’t try to put a positive spin on it when I’m not doing so good. I don’t want a pity party, but I don’t want the positive police either.

I just want you to listen.

Listen to me when I tell you how I’m really feeling, and just try to understand. Stop telling me to stay positive. Stop telling me what you think I should be doing. Just listen.

For the cards I’ve been dealt with, I’d say I’m an inspiration to myself. It’s not my fault if that’s not good enough for you.

This is my life, this is my body.

Don’t you dare judge me for not living my life the way you think I should.

Getty Image by JONGHO SHIN