Scleroderma Advocacy Can Take a Physical and Emotional Toll

Lately, my life has been at a standstill.

For the past 15 years, I’ve found purpose in being a scleroderma advocate, using my voice to share my journey and help others. But I feel like advocacy has started to lose its shine.

Six years after my diagnosis, I decided to be open about my journey with scleroderma. Until that point, I’d remained silent about my struggles, as a part of me was afraid of people’s reactions. Would they be able to connect to my story? Another part of me was angry at the hand God had dealt me.

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Sharing my journey

I started out small by creating a Facebook page where I posted updates about my doctors’ appointments and surgeries. I kept the content lighthearted and upbeat. I wanted people to learn from my experiences and not be afraid.

At first, I was terrified of what people might think of me sharing such private, heartbreaking events. At one point, I needed to have a lung biopsy because my lungs weren’t responding to medication very well. I recall mulling over whether to post that information to my page. I worried people would think I was seeking attention or pity, which was far from the truth.

Eventually, my desire to discuss my journey won out against my fear of public opinion. My courage and willingness to share grew, and I started to post the meat and potatoes of my life as a patient. I never looked back.

The continued support of my Facebook community gave me the confidence to take my show on the road. I started to speak at conventions, medical colleges, and patient summits, sharing my journey and my struggles. The rest, as they say, is history.

The weight of advocacy

Lately, something has changed. My efforts to connect with others as Amy the advocate have started to weigh on Amy the sister, daughter, and friend. The more I share with the world, the more people demand of me. I’ve been asked to speak, advise, and participate in so many events. I never want people to think less of me, so I accept wholeheartedly.

After years of this, though, my life no longer feels like my own. Sometimes it seems like I’m living solely to provide support and comfort to others. The amount of energy required to continue my advocacy work has started to cross a line.

The more I think about my life and my 21-year journey with a rare disease, the more confident I am that I’ve found my calling. Being able to help people living with scleroderma fills a hole I had in my life. But where do I draw the line? How do I make my life my own without feeling guilty?

For so long, I’ve tried to be everything for everyone, helping each person that crosses my path and making sure they never feel as alone as I did when I was diagnosed. However, it increasingly seems like I need to take a breather.

Knowing I needed to make a change, I turned to the person I trust and admire most for advice: my dad. His question resonated in my core: “When is it your turn to live for you?”

As I write this, his words run through my head trying to find a home. I have slowly started turning down new projects and am learning to say the word I’ve had such difficulty uttering: “no.” That two-letter word has changed my experience as an advocate and a patient.

Although declining a request to participate or help others is hard for me, it’s important for my mental and physical well-being. Will I ever stop being an advocate? Probably not — it’s my calling. But I’m slowly learning that sometimes, being a little selfish is OK.

Note: Scleroderma 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 Scleroderma News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to scleroderma.