Recently, I realized that people close to me view my vocalization about Fibromyalgia negatively. This brings up a whole lot of things I wish people would understand.
The first is how this hurts – that you don’t understand, and are passing judgement.
As far as not passing judgement, and trying to understand, I know people can be uncomfortable in regard to witnessing others’ feelings. Please know that we are far more uncomfortable feeling it. The least you can do is be there with us.
Know this – I am not complaining. I am not looking for sympathy. I am not dwelling on the negative. I am simply talking about my experience, examining it, and trying to better myself.
I am in pain ALL THE TIME. I certainly don’t talk about it all the time. I don’t want to. It’s annoying enough being in pain 24/7.
If I’m explaining something to you, about what I need to do, I’m trying to convey something important. Maybe I feel guilty because I was late, or because I couldn’t make it somewhere, and I’m telling you about how much pain I was in, and what I needed to do to manage it – because I want people to know that I care about them, I want to show up, things are important to me… but I am not in control of my own body in a lot of ways. It affects my ability to do things.
I’m not dwelling on the negative. A positive outlook won’t fix things, but trust me, I’ve got a positive outlook. I hope that someday I will feel better. I do everything I know how to work towards this place. I don’t know what to tell you if you find my reality too negative. Pain is something that I have to take into consideration. I have to live my life around it. I have to plan so that it doesn’t take more of that life away. If you feel that I should pay less attention to it, know that’s absolutely unrealistic. Listening to my body is what helps me do my best. Resting when I need to, and communicating my needs with the people around me is really freaking important to my overall health.
I know people who complain and use their fibromyalgia as an excuse not to try, not to do things… I’m not one of them. If you know anything about me at all, you should know that I try as hard as I possibly can, in so many ways!
I talk about it because I wish I would’ve had more knowledge earlier on, I wish I would’ve found someone else sooner who was sharing their experiences. It could have helped me in a lot of ways, and there is still far to go concerning awareness. Every bit of ignorance or intolerance, every lack of empathy, proves just how much I need to keep talking!