Reduce Misconceptions by Helping Loved Ones Understand Scleroderma

How to cope when even a well-meaning phrase can cut daggers

Amy Gietzen avatar

by Amy Gietzen |

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“Wow, you were just discharged from the hospital? You look healthy to me.”

I can’t remember a time when words have hurt me more.

According to the U.S. Centers for Disease Control and Prevention, more than 53% of Americans are living with a chronic medical condition. As startling as that statistic may be, chronic illness, especially scleroderma, tends to create an extremely isolating way of life.

Scleroderma has a way of singling you out, maybe because no case of scleroderma is like another. This uniqueness can include symptoms both usual and unusual, and some of them are invisible to an onlooker. This leads to misconceptions about our physical complaints, one of the more upsetting aspects of living with scleroderma.

These misconceptions are often packaged in scornful condemnations and accusatory statements of laziness, forgetfulness, or well-meaning ignorance. The reality is that just because we look OK, it doesn’t mean we are OK — physically or emotionally.

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Educating others

Teaching others how to best support us is a must. After all, invisible illnesses aren’t psychosomatic. Even if anxiety and stress can worsen our symptoms, that doesn’t mean the root cause of our illness is psychological, or that we should just “learn how to cope better.”

Another common misconception is that scleroderma is predictable and stable. When someone says, “You were fine this morning,” it rings through my head more times than I care to count.

Sometimes scleroderma feels better, and sometimes it feels unbearable. These ups and downs tend to be unpredictable. Even more frustratingly, our symptoms tend to flare up — but we have no idea how to predict their severity or duration.

Most people living with scleroderma, including myself, are used to being criticized, or even not believed, during our long periods of misdiagnosis and because others are unfamiliar with the disease. We’re even used to the kind of toxic positivity that’s meant to be encouraging and helpful, but feels patronizing and hurtful.

Therefore, it can be cathartic to share stories of grief over the life we feel we’ve lost, or about the life we now endure.

Understanding scleroderma can be challenging for the people living with it, but it’s also confusing and worrisome for our family, friends, and even co-workers. Talking to your loved ones about your experiences with the disease may be awkward and uncomfortable, but it’s also likely to be helpful.

Proactive communication is key. Sometimes we feel embarrassed when we admit we need help, flexibility, or patience from the people we love. We may think we’re a burden. But open communication about our needs and limits can often alleviate some of those feelings. It also gives our family the opportunity to adjust and learn the best ways to meet our needs.

Finding the support you need

Social support from family, friends, and loved ones can be invaluable when struggling with scleroderma. However, if your loved ones aren’t supportive, it’s more than acceptable to seek emotional support elsewhere. National organizations and online groups can be a great outlet for support from like-minded people experiencing similar symptoms and feelings.

Additionally, it’s also beneficial to bring loved ones with us to medical appointments, so they can ask questions and learn about scleroderma directly from our healthcare professionals.

Others will need help learning how to support us. Maybe that’s not bringing up our condition in public or in front of strangers unless we choose to talk about it. Maybe it’s through offering emotional support without attempting to fix or “do” for us.

The people in your life who love and care about you want to help. Unfortunately, they often have no clue how to do that. Our loved ones need us to guide them, and in the end, that makes for a stronger line of communication and support.

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.


Carol Edwards avatar

Carol Edwards

Oh my gosh, I have just lived this same scenario this last week. You don't know when or how severe a flare-up will be. And yes, I look great on the outside, I did get that comment a few days ago, but the inside is not working well at all. When a provider does not believe you, we are in trouble. When a provider does take you seriously, you feel like you have a glimmer of hope, maybe a win. Thank you for the articles to let us know that we are not alone. Carol

Cynthia Swartz avatar

Cynthia Swartz

thank you for this... i find that i feel sometimes i share too much and sometimes people think i am just making excuses or just need to get more exercise and i know they love me and are only trying to help but i know they truly do not unstand but will show them this article.... thank u so much... God Bless!

Amy Gietzen avatar

Amy Gietzen

Cindy, you are entitled to share as much as you feel comfortable with. It is easier for others who aren't living with this disease to think they know how we should act or feel keep your head up!

Kristine M JENSEN avatar

Kristine M JENSEN

This essay really resonates with me. I've had drs yell at me not to waste their time, because "there's nothing wrong with you" or "until your rheumatologist gets this under control, I can't help you". I've struggled to explain some of how the disease functions; only to be told I should try X, Y, or Z by well-meaning friends or family. I am a private person who hesitates to join the support conversation groups because I'm not comfortable with being that open among unfamiliar people. That's why I love your essays so much! I can still draw inspiration and support, but only comment when I choose. Thank you.


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