Shanna Joy White
My name is Shanna Joy WHite, I am 27 and I have AS. My first excruciating episode with AS, as I later came to know it as was at 3 months pregnant with my first child. A lengthy battle to convince ANY Doctor something was NOT right ensued. I became bed-riddne with such pain that my ex had to lift me out of bed himself to get me to the bathroom..I was told over the next 3 years it was either normal pregnancy pain OR my body recovering from pregnancy..as I had become pregnant again when my first child was 6 months old..Not until my my second child was 1 was I finally taken seriously and sent for a simple x-ray which discovered bone loss in my lower back/hips and a full body scan that showed high inflammation levels..that an assigned Rheaumatologist finally gave me the diagnosis..The frustration just to GET an answer and the long painful 3 years i was told nothing was wrong or insinuated I was exaggerating by many doctors..didn’t help like i thought it would to finally get an acknowledgement that I wasn’t insane but did have something wrong that was severely affecting my life..Because I learned what i had was Incurable and my only options were many may medications that had more side effects then my actual disease itself it seemed. Empathy severely lacks for AS sufferers..Every day is a struggle filled with pain..cleaning is like climbing a mountain and the exhaustion that comes along with it makes being a single mom some days feel impossible..People see me and don’t see my illness and therefore I’m deemed as a “Slob” because I had to slack off on chores or “lazy” because sitting is my favorite activity, the only time i feel normal..the lack of research for a cure or even a cause filled me with anger..when i see more and more pills coming on the market that have more and more dangerous side effects and have never been effective on my pain or my disease progression..And how is it research for dangerous pills are everywhere but no one cares why or how to FIX it..I feel helpless and angry that my Drs who KNOW I have AS just tell me to pop some tylenol and move alot even if sometimes moving is too much mentally to handle when I “just don’t feel like dealing with this pain i dont care how good it is for me”..The amount of judgment and LACK of empathy are almost as bad as the pain and exhaustion..My only silver lining in this struggle are my 2 boys..I was told pregnancy might have triggered AS..but if that is the case..It will always be worth it!
Saint John, New Brunswick, Canada