I am not affiliated with any organization. I am just one person who has Ankylosing Spondylitis. That allows me to speak my opinion. I can talk about my experience with this disease, not just what some lab can confirm. You see there is not enough research to tell the whole story. My hope is that the more we speak up the more they hear and learn then the less those in the future will have to suffer.
So many of us have to learn the hard way what all this disease can do. I wish in the beginning I knew what was in store for me. We are all affected differently so nothing is set in stone but I like knowing what I’m facing or what I could be facing. It’s outrageous to be told it’s in my head because docs haven’t ran a study to confirm it. Ankylosing Spondylitis has not been researched enough so instead of telling me it’s impossible just admit you don’t know. I’ve been lucky to have honest doctor’s here and there and I have great respect for those that can admit they don’t know it all. How could they? With every new diagnosis or malfunction of some body part the doctors would tell me it’s not related to AS then I would talk to those in support groups who all had dealt with the same thing. Well that is a coincidence. Maybe part of the problem is no one single doctor deals with enough patients who have A.S. to understand the full scope of the disease or with only a few or even just one patient in their care they don’t see the need to learn about it. However we justify their lack of bedside manner in our treatment I don’t completely blame them for it all. After all it is our job to be our own advocates. Every person out there who has some sort of disease must do the same and every single disease known to man has those with it fighting for awareness in hopes more doctors will understand.
Finding support from those dealing with it saved me from what could have sank into deep depression. Learning to research A.S. and speak out about what we actually deal with beyond back pain gives me purpose. I feel like I’m fighting it with every effort I make to educate others. How do you fight back?