Advice For My Younger Self
I knew — in some intuitive way — that I had ankylosing spondylitis (or something similar) about a decade before I got my diagnosis. I knew it when my eyes started swelling up and when I'd wake up more exhausted after a night of sleep and when I'd toss and turn after strange spots of pain would radiate through my body. I knew it when I'd found out that several of my paternal family members had arthritic issues and hip replacements.
When I finally went to an eye hospital after several recurring bouts of uveitis, they found that I'd had the HLA-B27 marker, leading them down the road to diagnosis. There were some barriers: For one, it seemed doctors had a hard time believing my symptoms were as bad as they were.
Two, ankylosing spondylitis wasn't exactly very well known around 2009 (these days there is way more awareness). Third, when AS did come up, it was thought that it was mostly a "man's disease." Lastly, lapses in insurance (as well as flare-up periods followed by confusing remission periods) made diagnosis difficult.
But in all of that confusion, there are some things I wish my younger self would have known.
Know that feeling out of control is normal
You're not alone if you feel like you don't have all the answers. You're not alone if you don't understand what tomorrow will look like. You'll have questions about prognosis, medication, what this may mean for your job or family or social life — and those answers might not reveal themselves on your timeline. This is normal, and eventually, you will figure everything out. AS will become a part of your life, rather than a confusing obstacle that you must overcome. But this takes time, and it's not linear or clean or perfect.
Write down all of your questions, do your own research
Use valid medical journals and resources like PubMed, MayoClinic, Spondylitis Association of America. Take advantage of this website and join a support group in your local area.
Don't become obsessed with the Internet or what other people say
As this new part of your life unfolds, you will learn more and gain insight as you go. Don't obsessively use Google or group forums. This is harder said than done — and I've talked about this before — but it's important that you give yourself a break from the Internet here or there. No one's experience with AS, medication, exercise, nutrition, mental health, or lifestyle will be like yours.
The worst thing you read isn't guaranteed to look like your experience, even by a long shot. While connecting with people is incredibly helpful, especially during the pre- and post-diagnosis stages, it's important to remember that your AS experience is entirely unique. And that the Internet is not a friend to anxiety.
Keep your routines where possible
When I was diagnosed, I thought, "my life is over." I entered a period of mourning, which distracted me from my everyday life. I thought, "everything has changed," and that thought kept me from enjoying my life. While things did change (new ways of eating and exercise, for example), it was important that I didn't hide from the world. I kept my routines sacred. I continued dancing and swimming. I continued my creative pursuits. I made sure to embrace the things that stabilized me — the things I identified with — because with AS being so unpredictable I need something rock solid.
What are your best tips for diagnosis? Share below!
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