Scleroderma Patients Deserve to Be Heard

Amy Gietzen avatar

by Amy Gietzen |

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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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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.

listening to patients | Scleroderma News | Amy Gietzen attends the National Scleroderma Conference in Philadelphia in 2018. In the photo she's posing outside next to a large stone globe.

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.

Comments

Nancy Collins avatar

Nancy Collins

I get frustrated because even though the doctors listen & take notes about what I am telling them, they actually do nothing. They don't seem to consider looking into any other cause of what I tell them. Finally, I suggested that I may have Parkinson's too but unfortunately can't see a neurologist until July (back scheduled because of covid)

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Linda Medlin avatar

Linda Medlin

Hi Ive been living blindly with scleroderma SLA since the late 1990s. It started with difference in my pointer finger on my left hand - just the tip... Dr diagnosed Raynaud's Phenomenon and referred me to a private specialist... The specialist said 'come back when you have more symptoms'. I did some 12 years later. By this time, the RP was no affecting all my extremities - fingers, toes, feet (cramps), ears, nose, lips and nipples. I also had heart abnormalities and pulmonary hypertension. During the 12 years i had constant chest infections and trouble with my lungs - was told I was just unfortunate and no medication was really able to support me. I've been diagnosed with skin rashes, heart problems, lung problems, joint problems, hoshimotto, told to be aware of LUPUS. I hope that the medical profession will catch up to this disease and listen to act for those who suffer with this disease. It is different for everyone and it's scary. My body is affected every second of the day, I'm in constant pain, discomfort and struggle every day - but as my brain is still 'good' so I'm not taken seriously. But I feel like I'm not being listened too. Please listen to us, don't fob us off - tell us what you are looking for, how it can affect us and when and what we should be looking for and why.

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Amy Gietzen avatar

Amy Gietzen

Amazingly said Linda! My feelings are so similar to yours. I appreciate your truth.

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Tim Harley avatar

Tim Harley

Thank you for your honest and open article. It can be very frustrating when discussing what's happening with one's body. I certainly don't know everything. But I have lived in my body all my life. When something is different, I notice it. My journey started in 2004. After three initial years of testing, in and out of different specialists offices (neurology, rheumatology) no one had an answer. It's difficult and I do not envy the medical profession when it comes to diagnosing so many pathologies that can so closely mimic so many others. And each DX appears to be a DX of exclusion; ruling out other possibilities. And each specialist typically focuses on what they do. No, not enviable at all.

Whatever I was dealing with then (I truly believed it was most likely MS. most of the systems that presented have been neurological and neuromuscular), remitted. And over the years I've had relapses. But all resolved on their own in short time. I never went back to a doctor about them.

This year however, a relapse struck that put me back in the game. The testing has begun again and I received a positive ANA with positive SCL-70. I also now have cardiac and pulmonary involvement and a couple areas of thickening (that I really only mentioned in passing to my PCP), nail issues and some others systemic issues and the symptoms aren't remitting this time. So, I am researching.

Anyway, again, thanks for your sharing.

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