Bah Humbug: The Holidays and MS
Like a shark rocketing from the depths to attack its prey swimming peacefully along the ocean surface, the holidays have arrived. Every year, I feel like their appearance is faster and more sudden than the year before. Here’s what I have to say to the holidays: Bah Humbug!
The most wonderful time of the year?
When it comes to this time of year and chronic illness, you are bound to see a ton of articles offering up tips on how to “survive” the holidays. I’ve even written some myself because they are so crucial to those battling a chronic illness.
Instead of giving tips on how to get through the holidays, this year I want to talk about why my illness makes me dislike them so much.
"Surviving" the holidays?
Before you lump me in with Ebeneezer Scrooge, think about how many articles you’ve seen that have the word “survive” (or similar) and “holidays” in their title. That should tell you how incredibly difficult this time of year can be for someone with a disease like multiple sclerosis.
I’m clearly not alone in my concerns when it comes to this time of year.
Loneliness during the holiday season
Multiple sclerosis is a very lonely disease and the holiday season only accentuates that. Many of us with MS have to cancel many activities because we aren’t feeling well. The holiday season is packed with events that we desperately wish we could attend but are often unable to.
Not only does that make us feel like we are missing out, but it also makes us feel alone. Many of us are stuck at home, and it’s not easy knowing that others are out being merry while we can’t leave the house.
MS also has a tendency to wreak havoc on relationships, meaning many of us simply have few to no other people with whom to celebrate.
Loneliness is a way of life for many of us with MS. The holidays, which emphasize celebrating with others, really ratchet up our feelings of isolation.
A change in routine
Over my many years with MS, one thing that has proven extremely beneficial to my health has been keeping a pretty regular routine.
Following a regular schedule seems to benefit my body and my mind. My cognitive problems are minimized by repetition and being on autopilot. My fatigue is also better because I’m utilizing the same amount of energy most days and I’ve adapted to that.
The holiday season changes things up for me and I tend to struggle. It may sound crazy to some, but something as simple as the shows that are normally on TV at a certain time not being on can impact me.
Everything feels like it changes during the holidays and for someone who relies on the familiar, that makes me struggle.
For many people, the holiday season tends to require people to do a lot of traveling. For someone like me, that’s an absolute nightmare. I often struggle trying to maintain any sense of comfort simply sitting on a couch, so trying to sit in a car or airplane is agonizing.
Pain, spasms, and tightness make staying in one position incredibly uncomfortable. Travel is also super exhausting for me. For someone who already suffers from fatigue, adding travel to my agenda is a disaster.
All in all, it's a sensory overload
Whether it’s being at a gathering or watching the days unfold via TV or the internet, the holidays are loud. Not only audibly but visually as well. Everywhere you turn, things seem to be turned up a notch, with loud music and bright colors.
Most folks out there love that, however, if you suffer from sensory overload, as many with MS do, it’s incredibly difficult. It’s not that I hate decorations or Christmas music (ok, I don’t really like most of it) or fun, it’s that it’s incredibly painful for me.
There have been so many times during holiday seasons where I’ve wanted to run to my bed, close my eyes, and put a pillow over my ears.
People have a lot of expectations for the holidays
One of the biggest reasons I dislike the holiday season is how it makes people think of me. I have to skip out on many events or cancel at the last minute, which makes people upset. They may be fairly understanding of my condition most of the year, but during the holidays they are much less so.
People have a lot of expectations for the holidays. Many are also super tied to tradition. An unpredictable disease like MS doesn’t play well with expectations or traditions and I know that has made people resent me in the past.
The level of guilt I have felt from others when I haven’t been able to attend holiday functions because my body wouldn’t allow it has had a tremendous effect on me.
The impact is bigger than you think
I could probably go on and on about the ways the holiday season is difficult for people like me. The bottom line is that everything is kicked up a notch during the holidays, which isn’t easy for me to navigate. I’m not really a 'Scrooge'. I don’t really hate the holidays, I hate how they make me feel.
Even with that, I still have things I enjoy about the season, like cooler weather, Christmas beers, good food, and time to reflect. The holiday season tends to make me withdraw a lot, but that isn’t all bad because it forces me to focus on the simpler things in life.
At any rate, I hope if you read this, you’ll at least take a step back and be a tad less critical of others this time of year, especially if they don’t conform to what you expect. This is a time of struggle for a lot of people and many of us are just trying to survive.
Thanks so much for reading and feel free to share! As always, I would love to hear about your experiences in the comments below!
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