I love the Ankylosing Spondylitis support groups. They make me realize I am not alone. It’s humbling to listen to what others are going through. I’ve found so many of us are effected so differently. I’m not sure if it’s the disease severity or our individual ways of adapting to it. Is it due to different pain tolerances? I really would love to know. It has to involve the disease process somehow because not everyone will fuse. Some will suffer daily while others just get flares every now and then. So is there a reason for this? Are we all wired differently or do we just handle it differently? I’m not sure anyone will ever have that answer.
I do know that I can’t continue questioning my ability to tolerate my pain based off someone else’s. I have to listen to my body and not worry whether or not Jane (there is no particular Jane I am referring to so any one named Jane please don’t be mad at me right now) would have laughed that twinge off while I was crying in bed. I must learn to respect myself and trust that I know more about my body than someone else whom may be dealing with the same disease but they are still not me. It’s no fault of any one but my own for feeling this way. When I was first diagnosed I compared what I was feeling to everyone else I talked to. That doesn’t work! It left me feeling horrible about myself. I now know that we are all different even though we have some of the same “labels”. I enjoy these groups now as a way to show my support to others. We can be comforted knowing we are dealing with the same battles even if we don’t handle them the same.
They are a judgment free zone?!
This disease drastically impacts my life but many have told me it can’t because of the things I am still able to do. I’m not suggesting anyone else do what I am doing. I don’t expect myself to do it but I’m certainly happy I can and I will continue to until the day comes I physically can’t any longer. I don’t know how I can get on the bike and ride 30+ miles or workout for one hour everyday. I promise I feel sore if that’s what you are wondering. It hurts like crazy and some days I can’t walk for sometime after. BUT it makes me feel alive! It makes me feel like I’m doing something to fight this. It’s what works for me whether it reduces my pain levels physically or just helps me mentally accept this disease. So I’ve felt this sting of judgment and had the negative thoughts that come with them and then I utterly shocked myself one day. I actually caught myself judging another for not doing anything and always complaining. I was so angry with myself. I despise the word “can’t” it is a four letter word! I hear it so often and I understand we are all limited and what I can do doesn’t mean you can but I feel we can always find some way to make anything possible. This is my personality though, I am a fixer, I will attempt to fix the world given the chance but I can’t expect that from someone else. I never voiced my opinion but the fact that I even thought it left me feeling so very disappointed in myself. I have always been one who try’s to never judge another.
We all try so hard to be there for one another but sometimes we hurt each other. Just like a big family right? I’m so thankful to have my big Spondy family for support. You’ve all been there when others just could not understand.