I say, "I have an autoimmune disease. My immune system attacks my spine causing inflammation and pain. Some days I cannot walk. On a good day I can't walk much, or sit on certain chairs, or sit for long periods, or stand for long. I tire easily and never know when I will be 'out of gas' and have to go to bed. The disease is called Ankylosing Spondylitis and you can read about it on the Internet." If they don't understand or are not sympathetic, that is not on me. I have had people impatient with me because I couldn't "do" for them, but I have had to let that roll off my back. I try to surround myself with compassionate people who care about me even if they don't understand the disease. The people on these pages understand and care. 🙂

Hi @A MySpondylitisTeam Member, I get your point various genes are involved. So little is known for sure different sources have different positions. Here is one point of view I trust: "One classic hypothesis has been that AS may start when the defenses of the intestines break down and certain bacteria pass into the bloodstream, triggering changes in the immune response.
The association between ankylosing spondylitis and HLA-B27 varies greatly between ethnic and racial groups." https://www.spondylitis.org/Ankylosing-Spondylitis

Racial groups have different patterns. This site poses that a bacterial infection in the stomach triggers the immune system at some point in our lives. I have a large family, ten siblings, cousins, aunts and uncles. I am the only one in my family to have it. I see your family has been hit hard. Thank you for adding your experience and knowledge.

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A MySpond...

I have friends and family like that. We don’t really talk about my illness. We just joke and laugh about different things I do that are not me.

My husband doesnt like to talk about but he doesnt deny it anymore.he also laughs with me about it.he does everything .he is a great supporter i am very grateful

My ex wouldn't even read the literature he thought I was crazy so I understand it might take a trip to the doctor's or to see you on one of your bad days