Leaving behind the shame of an ankylosing spondylitis diagnosis

Embracing your identity with chronic illness is liberating, a columnist says

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by Jemma Newman |

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I recently had a breakthrough moment during a job interview, when I proudly announced that, “I have an autoimmune disease called ankylosing spondylitis. In fact, I write a weekly column about it!”

I was perched on a sofa across from the owner of the company, discussing my life and how I expected the new role to fit within my schedule. It was a lovely feeling not to secretly wonder if I should hide the fact that I have a chronic disease or downplay the impact it has on my life.

I’ve often felt ashamed to tell people I have a disease or admit that I can’t perform a certain task. It might sound silly to have such feelings about something I have no control over, but I think the shame comes from the sense of pride I always got from being capable and in control.

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“Shame warns us that social bonds are in jeopardy,” a Psychology Today article notes. “There’s a worry that others are seeing us, judging us, and finding us so wanting that they will reject us.”

Before my AS diagnosis, perceived weakness simply didn’t align with my personal values. I didn’t want to be labeled a whiner or a complainer, or seen to be weak.

I also worried that if I declined to do something “normal,” such as sitting down at a restaurant with fellow parents from school, I might be seen as standoffish or not a nice person. My AS symptoms have made me say “no thanks” to many social events when I’m too exhausted or in too much pain to sit or stand for long periods.

Turning shame into pride

I no longer have these concerns about what people think of me and my AS. I’m not sure when my mindset changed, but today I feel proud of the person I am. I know I can achieve great things, even with a crippling chronic disease. I’m capable of tackling challenges and making exciting life changes.

For example, switching to a strict no-starch diet was extremely difficult. It is an ongoing commitment that requires immense willpower to reduce my AS pain and stiffness. I’m proud that I spent months researching a holistic approach to managing my AS symptoms and tested many other potential solutions, such as swimming and hydrotherapy, with positive results.

Those of us with AS don’t need to feel unworthy or ashamed if we aren’t the same as we used to be before diagnosis. We can still be extremely capable while living in difficult conditions. AS doesn’t stop us from having wonderful relationships or using our knowledge and skills to add value to society.

These days, I think managing and living with a chronic disease is something to be proud of. When it comes to interviewing for a job or finding new friends, I don’t want to hide who I am. I want to embrace and love the entire me. Living with AS has given me plenty of opportunities to cultivate empathy for others, practice resilience and flexibility, and find a positive path to navigate challenges.

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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