Why I Make a Point to Embrace the Holiday Spirit
A change in perspective has made all the difference for this columnist with EDS
I’ve always loved the holiday season. Even though I can’t embrace it with abandon, as I did as a small child, I still revel in the feelings of Christmas.
To me, the holiday season is truly about giving to others. This time of year, people are often gentler to one another, and I’ll see random acts of kindness while out and about. I believe we can all embrace that spirit of giving, regardless of our religious beliefs.
While my family celebrates Christmas at my parents’ house, we typically travel to my grandparents’ home in New England for New Year’s. My dad has numerous siblings, so the gathering is always a big, chaotic, lively mess. As we grandchildren have gotten older, we all can’t make it back each year, but a good contingent of us is always there, and it’s wonderful reconnecting.
This Christmas will also be the first time since 2019 that my brother, sister-in-law, and niece will be here for the holidays. As expats living abroad, they were unable to return during the height of COVID-19. I can’t wait to see the joy on my niece’s face, as she’s now old enough to enjoy the wonder of seeing a Christmas tree and tearing paper off gifts. Witnessing kids’ joy during the season is always a great reset for me when holiday stress amps up.
And while Ehlers-Danlos syndrome (EDS) is always around, I work hard to push it to the periphery during this time of year. Sure, I have to be careful about what I eat, now more than ever. If we get snow at my grandparents’ house, I have to be extra cautious while sledding so I don’t hurt myself. But as much as possible, I try to embrace the holiday spirit and find joy in what I can do, rather than wallow in disappointment about what I can’t.
Family, fun, physical activity, and realistic positivity are critical for me in managing EDS on a daily basis. Without question, many aspects of living with EDS aren’t fun. But I’ve also received so many wonderful gifts, such as my change in perspective. Focusing on what I couldn’t do only served to short-circuit my joy.
So I acknowledge what I can’t do, and maybe I’m unhappy about it for a time, but then I move on and find pleasure in my abilities. This approach makes all the difference. And in this season of giving, it reminds me that I have much to be thankful for, no matter what obstacles EDS might throw in my path.
Note: Ehlers-Danlos 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 another 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 Ehlers-Danlos News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Ehlers-Danlos.
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Comments
Linda
Hi Karen. I read your articles every week and simultaneously enjoy and learn from them. I have a daughter in her 20's who was diagnosed several years ago. I was wondering, with all the co-morbidities that go along with Ehlers, is there anyone that co-ordinates all the medical care involved? My daughter goes to multiple doctors (mostly out-of-pocket) and no one communicates with anyone else.
It is very frustrating and more importantly, I feel like my daughter is not getting the best overall care. Any suggestions would be very helpful. Wishing you a happy new year! Thank you for sharing your trials and tribulations with Ehlers. You help and inspire more people than you know.
Karen Del Vecchio
Hi Linda. Thanks so much for reaching out! I'm sorry to hear about the frustration you're having. I don't have one central person who manages my care either. I often re-explain things to each doctor when I have an appointment and do my best to keep track of things myself. A primary care doctor who understands is certainly a big piece of the puzzle; for example, my doctor never questions if I ask for a referral to see a specialist. Other than that, however, I wish I had better advice for you. I think it's something that everyone tries to manage as best they can. Best of luck to you and your daughter!