Sometimes with a chronic illness all we need is for someone to say, I’m sorry. What we long to hear is I understand. Support groups are one of the few places I found that. My family and friends have been learning as we go. It’s not easy for them to understand what they can’t see or feel but they are trying and that is all I can ask for from them but sometimes I need more. I need to talk with and hear others talk about the same things I’m dealing with!
I remember the first time I went looking for a support group I just felt lost. I was coming to terms with what all of this meant and I had hit my first real struggles with this disease. I needed to know others were out there and they understood what I was feeling. I found the SAA’s message boards. It was fantastic! I knew I wasn’t alone in my struggles and that meant the world to me. I have since found many other support groups and made a list for you here.
I think we need each other to stay sane through all this. Knowing you are not alone is huge in helping you cope with things. Gaining advice from those that have dealt with it first hand. Just listening to others stories has inspired and humbled me through the years. Cookie has put undertaken a massive campaign called Faces of AS and it’s a long list of those with Ankylosing Spondylitis submitting their picture and story of their battle against AS. I sit and read through them when ever I find myself struggling. You can learn more and read some of the stories over here.
I found myself having these moments where I am actually happy to see these people dealing with the same things I am. That sounds wrong to say because I don’t want them to hurt but I don’t want to hurt alone either. That is probably a horrible thing to say. I hope you all understand what I mean.