Ask the Advocates: Coping
Coping with Ankylosing Spondylitis
If you had to pick 1 aspect of your life that has been most affected by AS, what would it be and how have you coped with that?
If I had to pick one aspect of my life that has been affected the most by AS, it would have to be my social life. I've lived with social anxiety pretty much my whole life but having AS is a huge struggle for my social life, too. When my symptoms first started, I didn't know how to keep explaining to everyone that I was in a tremendous amount of pain and that I wouldn't be coming back to work. I sort of shut myself out for months whilst dealing with the pain and seeing doctors multiple times a week. During that time I had friends asking what was wrong, and I had to explain to them that painkillers weren't working, and doctors didn't know what was wrong.
I find that some people can't grasp the fact that someone could be in pain forever, and I lost quite a few friends because they didn't believe me. I also have a hard time keeping friendships because of the fatigue that I feel on a daily basis. It's hard when you have to cancel a lot and you get known as the girl that always bails last minute due to pain or fatigue.
The aspect of my life that has been most affected by AS is my love of playing with kids. I am a Special Education teacher and a loving uncle. I love being goofy, running, playing, kicking a ball, or the occasional piggyback ride. AS more recently has robbed me of the ability to do so, and therefore the ability to be myself. I gave up on piggyback rides a while ago, and I needed to institute a "no ups" policy with my nieces and nephews. Unfortunately, the resulting pain began to outweigh the joy.
Telling my nieces and nephews that "Uncle Elmo" couldn't pick them up any more was harder than you could imagine. They didn't understand why. I mean, how could they? The experience was heartbreaking. Running and being goofy with my students followed soon after. Eventually, I needed to transfer to a new teaching position that requires less physical demand. It's not as much fun, but it's safe, and that's what I most need right now.
My life as a mother. I believe it's the small things that make it especially hard for me. Having had to modify how I baby wore and breastfed my baby. How long it takes me to finish household chores. Having to rely on others for very basic things. Spending most of life as a mother needing a housekeeper, babysitter or someone to run errands, because I just had enough pain tolerance to bathe my baby or interact with him between naps. Not being able to be the type of mom I had imagined to be or witness my friends being.
Being a parent is my whole life. It's also one of the best aspects of my life. I've enjoyed it so much and I can't imagine my life without my child. But in the dark moments of self-pity and frustration, I do think about how much easier and wonderful our life would be if I wasn't sick a majority of the time. If we didn't need to modify every single aspect of our lives to accommodate my stubborn body. I think about what I have taken away from my son's childhood experience.
Do you use the word disability to describe your AS?