How online communities affected my AS journey

A columnist describes her love-hate relationship with social media

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by Janneke Phung |

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Without Facebook, my spine would likely be fused and, almost certainly, my quality of life wouldn’t be what it is today. But I hate giving it so much credit for my current well-being. Clearly, I have a love-hate relationship with social media.

In 2019, when I was in the early throes of ankylosing spondylitis (AS), I turned to Facebook. I was well aware that false and unscientific health advice was rampant online, but the reality of being on a long waiting list to see a rheumatologist for access to effective medication weighed heavily on me. I felt like my AS was rapidly progressing, and the idea of passively waiting more than six months for an initial consultation seemed a waste of precious time and health. I spent many evenings scouring the internet and social media for stories of hope.

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In desperation, I stumbled upon numerous anecdotes about people who found relief from AS symptoms by making diet and lifestyle modifications. I was skeptical, but desperate for relief and willing to try just about anything to minimize the symptoms and slow the disease progression. Most success stories I read were from people who had done some version of a starch-free elimination diet in combination with lifestyle modifications. I figured I had nothing to lose and possibly something to gain as I waited for my mainstream healthcare appointment.

Long story short, my journey with a starch-free elimination diet and lifestyle modifications has been wildly successful. When I saw the rheumatologist for my initial appointment, I was well underway to managing my pain naturally. I no longer needed medication to manage my symptoms. With my rheumatologist’s support, I decided to stick with what I was doing to see where it would lead.

During my most recent visit with that rheumatologist, she told me I’d graduated from her care because she’d noticed no disease progression since I started using alternative methods to manage my AS. She’ll be there for me if I need her, she assured me, but she has high hopes for my long-term well-being.

Recently, I chatted with my auntie, who started suffering from debilitating autoimmune disease symptoms more than half a century ago. She told me of times when she wanted to try alternative approaches to managing her disease, but didn’t know where to start. Unlike us, she had no online access to a plethora of anecdotal stories of others who shared a similar diagnosis. She’s always maintained a positive attitude, but has suffered significantly for decades.

It dawned on me that social media, with all its pitfalls, has played an instrumental role in getting me to the health and relief I’m experiencing today. I don’t recommend people trust everything they read online. But taking in the AS journeys of others and gleaning whatever help might be out there can help curb loneliness and provide hope. I’m grateful I took a chance, as it’s paid huge dividends.

Thanks for reading! You can learn more about my story, browse starch-free recipes, or peruse the stories of others who successfully manage their AS with diet and lifestyle modifications on my website. Join me on Instagram and Facebook for the latest updates and recipes.

Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.


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