The Price of Pain Relief
I am a 37 year old female with ankylosing spondylitis. My symptoms began when I was eight years old and I was finally diagnosed at 28. I take the management of my disease very seriously, most likely because for over 20 years my pain was dismissed. It was implied directly and indirectly that I was just really sensitive, overly dramatic, or otherwise unable to handle the aches and pains of normal life; that nothing was wrong with me.
When asked to write about my personal experiences as a patient who takes an opioid, I didn’t know whether I should do it. I felt proud to be asked, but then immediately panicked. How can I, a mother going through a divorce, put my name to such a topic? How could I risk exposure and public judgement by unapologetically recounting my experiences? That was the moment I knew I had to do it for everyone like me who is simply too afraid to discuss this topic.
After my diagnosis, I found the incredible resources of SAA. When I learned that my area didn’t have a support group, I volunteered to become the group leader. I absorbed the information in my “SAA Group Leader Binder” and then scoured libraries, book stores, and the internet to try to understand what was happening inside my body. I participated in research trials with the top researchers in ankylosing spondylitis. I tracked my labs, journaled life and dietary changes, and everything else I could think of in my search for the direct causes of my flares and pain.