How Scleroderma Affected My Attitude Toward Xmas Holidays

Celebrating Christmas has been complicated for columnist Amy Gietzen

The holiday season is often a happy time. Giving gifts, spending time with family, and celebrating with food and conversation bring joy to many people. But for me, the holidays bring longing and envy.

Christmas has always been significant for my family. While we’ve always held parties on Christmas Eve, Christmas Day, and the following Saturday, we tend to celebrate throughout the entire month of December.

​Growing up, I really enjoyed this. What’s not to love about baking cookies, having gift-wrapping parties, and decorating the house inside and out?

It wasn’t until I was diagnosed with scleroderma in 2001 that I started to find the holidays unenjoyable, exhausting, and lonely.

Feeling like a Scrooge
The first Christmas after my diagnosis was complicated. I knew nothing about scleroderma or what my future might entail. Everything was new and scary.

That year, I decided not to share the details of my illness to avoid the pain of telling my loved ones that I was sick. So I zipped my lips and tried to fake my enjoyment of Christmas.

By the next year, my entire family was aware that I had scleroderma. For the most part, they acted as if nothing had changed. No one asked me about my health or how I was coping, and I was thankful for that. I felt so awkward and uncomfortable in my skin that I was glad my family decided to avoid the topic.
Unfortunately, I wasn’t so lucky moving forward. Every Christmas thereafter seemed to be worse. One year, a young relative asked me why my fingers were “broken” and if they hurt while we were all eating Christmas dinner. Another year, I was gifted a pair of gloves that didn’t fit because my fingers were so contracted.

The final straw was when I contracted shingles on Christmas Eve. I ended up isolated in my room while my entire family gathered to exchange gifts and eat dinner.

As the years ticked by, the season felt more and more different. Cousins grew up, married, and started their own Christmas traditions. Older uncles and aunts passed away. My siblings moved out and stopped spending so much time at home for the holidays.
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I know people change and grow, and families expand and evolve. But I began to feel lonely, cemented in place and stuck living a life where nothing changed. Scleroderma was constantly raining on my seasonal parade. Christmas had gone from being a joyous occasion to a holiday I couldn’t care less about celebrating.

Rediscovering my Christmas spirit
It took some time for me to regain my love for the holidays. I had to do some soul-searching and find the crux of the problem.

In the end, I realized I was allowing scleroderma to dictate how I lived my life. I was letting the emotional toll of my illness take over my life and darken the light. Maybe it wasn’t just the holiday blues.

I decided to speak to a therapist. After a few sessions, I started to feel like I was making headway on coping with my feelings and finding a home for them.
I still have moments where I feel like saying, “Bah, humbug!” But I remember a tip my therapist taught me: I remember everything I’m grateful for, including being able to make memories with the people I love.
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Seeking help to sort through your feelings isn’t a bad thing. It helped provide clarity about my emotions, allowing me to concentrate on all of the joyous moments in my life.

Credit to Scleroderma News.com