My husband has had this problem for a very long time. Everyone treated him like he was just a drug addict until the diagnosis. And the pain center doctor still looks at him that way and he isn't even on any narcotic pain meds. Obviously your family has not done their homework on what this disease does to people. My husband in all honest is still expecting me to leave him because of the pain we can't be intimate, he is irritable, and can't be of much help with our 3 children. But I don't care about those things. I love him for who he his beneath the pain. And I'll be with him and take care of him until one of us is gone. I love him in this life and beyond. If someone doesn't want to understand what you're going through then they never will. You were diagnosed at such a young age and your parent didn't bother to find out what what happening to your body? Seems strange to me....my daughter is 6 and if she were to be diagnosed with this or anything else I would do my research so I knew what she was suffering from...what to ask her doctors ect. My advice...surround yourself with people who care about you and truely believe you when you say you're hurting and find yourself a darn good doctor. I'm so sorry for your trouble. my heart goes out to you.
Wife of 28 year old man recently diagnosed with AS. Looking for support for myself and him. We have 3 young children. And I want to be able to understand what's happening to his body and why...and what our options are as far as treatment. It has been a long road getting this diagnosis but atleast we know what is causing the pain now.
StandByYourMan, Thank you for taking the time to post, and thank you for being so kind. Your family, especially your husband, are very lucky to have you as a mother/wife. It is hard to find people who want to understand the pain we go through every day. I find it beautiful that you love him dispite all his pain and that you don't turn him away because of it. You are exactly what he needs right now.
I was taken to several different doctors when the pain got really bad, but I feel like my parents gave up when the doctors couldn't find answers. The thing that upsets me the most is that just a few years ago I was going through some papers from when i had first been to the doctors and I found a paper with my dad's handwriting that said "anklylosing spondylitis." It must have been mention by a doctor, or he had found info about it online, so why wasn't that investigated further? It leaves me to wonder "what if?"
i can't fall back i came too far, hold myself up and love my scars...
