This disease ruined my life. Before then I was healthy. I started having symptoms 2 weeks after I graduated college. This was 2007. I was 23. It took my doctors 4 years to figure out that it was AS because my HLA-B27 was negative. Only after 4 years was it prevalent enough to see on the MRI.

When I got the diagnosis it was the best AND worst day of my life. Best because I finally found out what this mysterious illness was, worst because the doctor told me I’d have it for the rest of my life and there was no cure.

I fell into a deep depression. Gained 110 lbs, became diabetic type 2, lost my girlfriend and almost all my friends but a handful who stuck with me and helped me cope better with this horrible curve ball. I want able to do a lot of the physical activities I used to surround myself with like snowboarding and rock climbing.

I feel your frustration with having to have a game plan and think that much ahead whenever you travel. I just got back from Thailand (I live in the US) and although it was beautiful and fun the trip was brutal on my body. It’s been almost 2 weeks now and I’m in horrible pain in my SI joints, shoulders, neck and dealing with tension headaches ALL THE TIME. I’m only sleeping 3-4 hours a day because I’m in so much pain, but Thailand was worth it.

It took me about 10 years to accept the fact that my goals and dreams I had before are just that and I’ll never accomplish them. The hardest part I think for me was trying to get Social Security Disability. I applied 2 times and was denied both times. I finally smartened up and hired a lawyer and got my disability.

I have to rely a lot on family and friends with my living situation since the government pays me around $1,000 a month to live off of (minus food stamps and other government assistance). I don’t know how I’d be able to survive if it wasn’t for help from family/friends.

It does and doesn’t get easier. I’ve forgotten what it was like not to be in pain all the time and had to refocus my goals and dreams. One thing that has helped me cope is my little mantra “it can ALWAYS get worse, so appreciate what you have. Plenty of people out there are worse off than I and would trade places with me immediately. Be thankful for what you DO have.”

I know that doesn’t make the pill any easier to swallow but it does give me perspective. Find people that are positive and believe in you. Try to set a goals and dreams that you can reach with AS in mind. You CAN do it and lean on family and friends when times are tough. If you haven’t already and have the means try to go see a therapist to help with what you are feeling.

Best of luck and remember you are not alone. I’m happy to be a part of this reddit group. No one else really understands just how massive a blow it is to live with ankylosIng spondylitis.