I get asked all the time, “What is it like to have fibromyalgia”? I usually say something like this: Well, think back when you had the flu, the worst flu ever, now imagine getting hit by a train or semi. Take all that and stay awake for 3 days, and live like that every day.
What I don’t answer and should is “lonely”! There is this “invisible” wall between you and your healthy friends. You see healthy people want healthy friends. They want to be able to go out and hang, do fun things. They don’t live with pain and exhaustion every day. They cant see past the wall to see who you really are. I mean think about it, how many of those did you notice before you got sick?
They remember the old you, the one that loved helping people, and would do everything you could. Now all they see is you be in ng tired and I’ll. They don’t see that you want to be participating in activities with them. They don’t see the hurt when you have to decl in ne their invite, the tears of having to sit out of yet another adventure. Eventually they will stop inviting you, because you were forced to decline too many times.
They cant see how strong you are for getting out of bed and actually getting dressed. How you were able to prepare a meal for yourself instead of having inng to have someone else do it.
The definitely don’t see how bad you want to live a normal life, how you long to be a normal healthy friend. They have no clue what’s it like to pretend to be normal. When everyone has all these expectations of you and you constantly fall short of them. When they are pressuring you to do things you physically can not do. They don’t understand it. They eventually move on, because you weren’t there for them anymore.
The truth is that no matter how many people try to understand you and your illness, they cant fully comprehended it all. They can’t comprehend what it’s like to live like this. You are alone in your thoughts. This illness takes over, and you don’t know of anything else to talk about, it has fully consumed you. You alone have to fight it, figure it out, find out what works and what doesn’t. They are confused and get mad when you cant hold it together and all you can do is cry over the simplest thing.
Being sick effects every part of your life. You feel guilty about how much it does effect you, but there is nothing you can do about it. It isn’t just going to suddenly disappear. It’s a very lonely journey with no destination in sight. It just eats at you until you are nothing but a shell of a person you used to be.