Reduce Misconceptions by Helping Loved Ones Understand Scleroderma

How to cope when even a well-meaning phrase can cut daggers by Amy Gietzen from Scleroderma News

“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.

​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.