Scleroderma Patients Deserve to Be Heard

When people learn that I have scleroderma, they tend to react in one of two ways.

Some offer pity and sorrow and treat me as though my life were over. They’ll look at me like I’m a lost kitten or mistakenly assume I’m now dependent on other people’s mercy and kindness. While I appreciate get-well cards and care packages, my life doesn’t revolve around them.

Others seem to second-guess my abilities or assume I don’t know anything about my body or disease. Scleroderma may be rare, but that doesn’t mean I’m incapable of managing my well-being. It hurts when people refuse to listen and mistakenly believe that having a disease means I’m uneducated and unaware of my surroundings.

This assumption can be particularly harmful when scleroderma patients are seeking care.

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December 8, 2021 Columns by Amy Gietzen

As a Scleroderma Patient, I Am All of These Things

Patients shouldn’t be underestimated

Living with scleroderma for more than 20 years has made me an expert on my body. I know how different tests, procedures, and medications will affect me, and I know what I can tolerate. But even at the beginning of my scleroderma journey, when I was still learning about my health, I deserved to be heard and respected.

The first time a healthcare provider didn’t listen to me was shortly after my diagnosis. The thickening and tightening of my skin had resulted in poor circulation, so I went to the hospital to have an angiogram.

I tried to convey my thoughts about how to make the procedure go more smoothly, but the provider wouldn’t take my suggestions into consideration. Frustrated, I started to cry, which I rarely do. So, the fact that I was crying angered me even more.

Since then, I’ve encountered many others who didn’t listen to me for one reason or another. Some have used my illness and emotions as an excuse to brush me off. It’s frustrating not to be heard, and I should never be shamed for feeling that way.

If we as patients can’t trust our providers to listen to our concerns and believe us, how can we be vulnerable and honest about what we’re going through? We put our lives in their hands and must have faith that they will handle our bodies and emotions with care. This level of trust is established by listening to patients and embracing their knowledge and experience.

Amy shares her experiences with medical professionals and students at the National Scleroderma Conference in Philadelphia, in 2018. (Courtesy of Amy Gietzen)

My past negative experiences deeply bother me, but I’m trying to turn them into positives by speaking out to invoke change. I’ve visited colleges, hospitals, and various organizations and used my voice to raise awareness about how patients should be treated.

If someone won’t listen to you, that’s on them — not you. Some people may be scared to admit when they’re wrong or when they don’t know something. I’ve dealt with many egos during my medical journey! It’s up to us as patients to advocate for our needs and educate others about our disease. Just because we have an illness doesn’t mean we’re incapable of thinking for ourselves and leading full lives.

I have scleroderma, and I am a professional, educated, and independent person. I live with a disease, not despite it, and it’s time people listened long enough to understand the difference.

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.