Are you having trouble with your family and friends not believing you regarding your disability, and thinking it’s, as so many doctors will say, “all in your head?” Do they say that you are faking the pain, faking how tired you are, that you are trying to get out of work, or the big kicker–that you are just getting LAZY?
This is one of the biggest frustrations of the invisible illness. You know what pain is, you feel it every day; you know the difference between being tired, and being dead tired! You want to shake them and say, “WHY WOULD ANYONE WANT TO FAKE THE TERRIBLE THINGS I FEEL!” You may even lose friends or family due to your condition. I pray you do not have to go through that; it is very heartbreaking. Every day, you wish that people understood.
One thing that makes invisible illnesses so difficult is that no one is able to see it; whereas, if you had a broken leg, everyone is able see it–so it is real to them. By nature, people are skeptical; when you’re broken inside, it’s NOT visible. When it’s not visible, people don’t comprehend your pain, fatigue, and fogginess.
Nevertheless, you are taking steps in the right direction by looking online for help—such as using this site, ILWAD. Once you finally have a diagnosis, ask the doctor if he could give you as much information as possible; ask what his plan of action is. It’s always nice to have a diagnosis, but there has to be some sort of relationship with your doctor. If you have faith in him and know that there’s a plan, then at least you have some sort of ease.
A lot of us like to do our own research, and the internet is great for that. What I have found most important are friends that can relate. I’m sure our family and friends aren’t trying to hurt our feelings by what they say; they just don’t understand. And in turn, it is easy for us to pull away. So I believe coming to ILWAD has so much to offer everyone. We are a little community that is growing worldwide, yet we have the heart of the Wizard of Oz’ Tin Man and the courage of the Lion.