My name is Lori and I am a face of Ankylosing Spondylitis. I don’t remember a time in my life that I was not in pain. When I was 11 I was told I had “growing pains” that never went away. For a long time I thought I was crazy – I didn’t understand how other people could be so productive and smile their way through an entire day when my body was screaming all day, every day, and all I wanted to do was cry.
I spent years asking for help and never getting taken seriously. I was led to believe that it was in my head, or caused by my lifestyle choices. (In retrospect, I am sure being a larger girl did not help things, but no matter how careful the diet, exercise was sometimes something I just could not manage). I couldn’t sleep. Trying to soothe myself at night, knowing what would be waiting for me when I woke was too much for me most days.
I didn’t do a very good job of maintaining my friendships. I am sure people got tired of me always cancelling plans at the last-minute and I was too embarrassed to tell them why. How do you explain to people who I can walk into the mall like a ‘normal’ person, and walk out an hour later with a cane because I can’t hold myself up. Or one day I can work a full shift and the next day I can barely lift my head. But I LOOK fine! (or so I am told, a lot). After all, I am only 35!
When I was still a single parent, I was at the grocery store one day with my youngest, who was only 2 at the time, and when I tried to lift her out of the cart, I realized that I was no longer able to. I had to ask a stranger to help me, and when I tried to drive home, I barely had the strength to push the brake pedal. It was a very frightening day for me when I realized that sometimes, no matter how determined I am, my own power is not enough. I cried a lot, felt sorry for myself, drank too much and cried some more. And then I got on with things.
I decided to keep asking for help, in every direction I could, until I found a way forward. I talked to my doctor. Again and again. She sent me to a Rheumy. Finally. The Rheumy told me I was not crazy. He told me that it is not normal to be in pain (this I really did not know – I thought others were just better at handling difficulty than me). He told me about A.S. and it was like a weight off my shoulder knowing that I was not alone. I started exercising even though it hurt more than you can imagine (and with time it helps! who knew?!)
I reached out to the people in my life instead of pushing them out (and strangely, no one has treated me any different really, I think they are relieved that I am relieved). I have set realistic goals with my children and let them know what my limitations are – they now know how to help with household chores and are happy to help out. I ask for help when I need it. I also met the love of my life – and married him! I am still in pain, all the time. The level changes, but it is always there no matter what I do. We have yet to find a medication that works for me. I am a face of Ankylosing Spondylitis, but it does not define me. I am a mother, artist, wife, daughter, sister and friend. I am happy, and A.S. can’t take that.
British Columbia Canada