My Worries for Christmas Day as Someone With a Chronic Illness

I was planning on taking a little writing break but I started musing about Christmas this morning and here we are again!

As Christmas fast approaches I imagine most of us in the chronic illness community are musing about what we want to realistically achieve over the next two weeks.

For those of us with chronic illness it can be an incredibly overwhelming time. Just trying to be happy for others, when your body is screaming at you, is enough to make you want to run and hide.

Even if, like me, you have a super quiet Christmas for two planned, there are still concerns. Will I be able to function on the day? Will I manage to stay out of hospital?

No amount of pacing or planning can ensure my body will do the right thing. I will pace though and my husband and I have removed all expectations. We will go with the flow and it doesn’t matter if it turns out to be a struggling day, does it? Does it?

Hmmm… let’s be honest… it does matter. I’d be kidding myself to say it doesn’t. It matters a lot to me. I want my husband and I to enjoy Christmas dinner at the very least. He sacrifices so much without any complaining so I want him to enjoy turkey with the trimmings.

I want to feel as pain-free as possible on the day so I can enjoy opening presents and chatting with family on the phone. I’d like the energy to look forward to phone calls.

I want to have some energy in reserve to really enjoy the Christmas DVD we’ve chosen to watch on Christmas night. I don’t want to be wishing it would be over because I can’t find a comfortable position for my broken bones.

Then there are the things I miss. I miss not being able to travel to see my family for Christmas. They are so close but so far and that’s really hard. I miss not getting to a Carol Service and Christmas Eve/Day Church Service. I miss not being able to go to large shopping malls and enjoy the Christmas atmosphere.

Even for those of us who don’t have mental illness, the lead-up to Christmas can be a melancholy time. It’s important to acknowledge all those feelings. They are real, important and very, very normal for those with chronic illness.

If you are feeling a little melancholy… you are not alone. My hope and prayer for us all is that whether surrounded by loved ones or home alone, we will have a merry little “chronic” Christmas Day, no matter what that may look like.

Follow Sam on her Facebook support forum, Medical Musings with Friends.

We want to hear your story. Become a Mighty contributor here.

Photo via Tom Merton on Getty Images

Find this story helpful? Share it with someone you care about.

Related to Rare Disease

collage of photos of a woman in the hospital

Living My Truth With a Rare Disease

Truth: tro͞oTH/ noun the quality or state of being true. “he had to accept the truth of her accusation”synonyms: veracity, truthfulness, verity, sincerity, candor, honesty. Why as human beings are we not able to tell the whole truth and it be OK? What is it about the truth that scares us and allows us to evade it until its presence is absolute? If I [...]
woman writing in notebook and using tablet at wood table

5 Steps to Becoming a Rare Disease Parent Advocate

If your lifestyle has become overwhelming while caring for a medically complex child, the idea of being a rare disease advocate can seem daunting. “How do I add advocating for my child’s rare disease community when I can barely keep my head above water?” is something I hear all the time. Having “been there” with my [...]
Decorated Christmas tree next to set dining room table

Adjusting My Expectations for Christmas With My Chronic Illness

It’s on its way! There is no stopping it! Christmas is coming! That thought may either excite you or leave you trembling with trepidation. There may be an in-between reaction, but generally, the Christmas season and the lead up to the big day is forefront of my mind by mid-November. I love Christmas. First and [...]

Finding Our Tribe Has Made All the Difference as We Navigate Our Daughter's Disability

I sit here, on a plane, traveling back from San Diego where our family has spent the last four days with our tribe. These are people we’re linked to because of a single gene on our daughter’s X-chromosome: the DDX3X gene. Because of a spelling error at conception in just one of their 60,000 genes, [...]