By Helen Scharber
How to tell my story of AS… Is it a tragedy - a story of pain, loneliness and despair? Or is it a comedy, featuring ridiculously incompetent medical professionals? Is it a heroine's tale, full of challenges and obstacles to overcome? Or is it perhaps a spiritual journey, in which I realize the greater purpose of all this suffering. I'm 34 now, and over the 12 years that I've had AS symptoms, I've told myself all these stories. On bad days, there is a lot of self-pity.
Why, I've often wondered on those days, do other people my age get to work all day and go out dancing at night, while I can barely keep up with my job, much less a social life? Why did my doctors insist for so many years that there was nothing wrong with me, sending me on an expensive, disappointing, and sometimes shame-inducing search for answers? And why, most of all, isn't our economy and society set up in a way that sees all the good I have to contribute while also cutting me some slack when I'm down?
But on good days I am grateful for the ways AS has helped me become a better person. All this pain and fatigue, the middle-of-the-night wakeups, the frustrating conversations with well-meaning people - all of these things have helped me develop patience. I'm more compassionate now. Living with an invisible illness reminds me that everyone has challenges in their lives, big and small, visible and hidden. I've learned to ask for help (sometimes) because I can now see that the idea of independence is largely an illusion - we're social creatures and we need each other to live. I've also begun meditating and discovered the freedom in paying more attention to what is happening right now.
I finally figured out that I had AS two years ago through an internet search, and my self-diagnosis was confirmed by a rheumatologist. Having a name for this disease has been helpful - doctors take me seriously now, my workplace has made some accommodations, and I understand better the connections between the pain, fatigue, and gastrointestinal symptoms I've had for years. Not wanting to start biologics right away, I tried several alternative approaches, finding nutritional therapy and dietary changes very beneficial. My symptoms aren't gone, but they tend to come and go more quickly now, and my life - while perhaps not normal for a young, single woman - is a lot less dominated by AS.
Over the last couple of years, the stories of people living with AS have given me a great deal of comfort, advice, and hope. The tragic stories have reminded me that I wasn't the only one suffering, and the heroic ones have shown me that having AS is not a death sentence. For my part, I'm finally figuring out that AS - like life - is terrible, beautiful, exciting, boring, scary, and hopeful. I'm writing my own story.
Other posts by Helen Scharber
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