How Scleroderma Affected My Attitude Toward the 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.
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.
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.
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.
Thank you so much for sharing this. I was diagnosed in 2019 with sine systemic scleroderma. I am still in the process of learning all I can about it, although I could relate to your story. My hands are really puffy that finding gloves that fit me are hard to find. I also experience a lot of numbness and tightness which makes many things difficult at times. My family is aware of my disease, and they just don't understand it. I am very seldom asked about it and the holidays are difficult for me especially when it comes to baking, wrapping gifts, etc. Sometimes you just feel so alone and then when you read something like this you are reminded that there are also others who know what you are going through. I also get counseling to deal with issues that arise due to my health. As I go through this holiday season you have reminded me that gratitude plays a key part in the way I feel emotionally. Thanks!
I am sorry to hear your family isn't being as supportive as you would like. I still have family that isn't very empathic to my disease. I just try to be as educating and upfront as possible about what I am going through. There will be people that just don;t get it and that's ok you can only be responsible for yourself and your actions. Try to find a facebook group or a support group locally for people to lean on it really makes a difference.
Thank you for this article. I am 64 have had almost each disease you have. You being so young made me be grateful my disease came in the last 25 years. I am seeing many changes now, but I feel so blessed to have lived this long.
Ofev RX is what gave me extra years. We have an almost invisible disease. All but my 6 amputated finger tips to first buckle. No more Oxygen for now. Just usual PFT test and monitor every 6 months. My body aches hurt like I ran in a 30 mile race! The thing with scleroderma is no 2 are exactly the same. Each one is different. I am donating my body to our college. My hand surgeon of 25 years who was chief of a large city hospital talked me into donating because I have the worst Raynauds he had ever seen. He tried new things on me and one other person and he would learn what worked and what didn’t. Like Botox in the web of fingers. Very interesting stuff and I pray someday they find a cure of this invisible chronic disease! Merry Christmas to all and take it easy ! ☮️🙏💙
Thank you for sharing a little bit of your journey with me! I am always so very humbled to hear about others like me living courageously with this disease!
My sister who is 66 ( I 'm 88) was diagnosed. about 7yrs ago and has so many health and mental issues it is hard going ! She has trouble keeping friends and changes living locations frequently! A lot of depression and financial issues !