I'm having a hard time this holiday season. I used to love Thanksgiving, Christmas, and The New Year, and I still do. These times make everyone extremely happy. These times are full of lights and music and smiles. These times are also full of food, activities such as ice skating, snow, and other fun winter festivities. For most people, these activities are joyful and exciting. Kids count down the days to the first snow, and parents anxiously await the chance to make a fool of themselves on the ice rink. The people that are left behind in this scenario are the chronically ill.
We say it's okay. Even after writing this article, I will continue to say it's okay. "It's okay if you eat in front of me", "it's okay if you go ice skating, I'll watch", and "it's okay, I'll just stay inside." The truth is that it is not okay. I don't choose to not be able to do these things; I never was given the choice. With my EDS, POTS, HM, and GI issues I can barely eat, I can barely stand up, and I can barely stay in school. These conditions don't leave much time or energy for fun outings or dangerous activities. The truth is that with each holiday a new challenge arises.
With Thanksgiving came the challenges of eating, and for many came the challenges of trying to explain their health to family members. I luckily had a small Thanksgiving with only my immediate family who understand my conditions, but I have many friends that were not this fortunate. Many of my friends did things like push food around on their plate to make sure it looked like they ate, pushed pain meds to keep up small talk, or had to run to the toilet to throw up. I personally barely ate at dinner, and quite frankly it was depressing. All I wanted staring at my plate was to be able to eat, but I knew that my body could handle maybe 20 bites if I felt adventurous. These few bites were proceeded by much pain, nausea, and an overall upset stomach. The truth is that this holiday sucked for me. I wanted to cry over the fact that a holiday revolved around eating, and everywhere I looked was food that my stomach could not tolerate. Later, my upset stomach led to high tachycardia for multiple minutes followed by a complete lack of any energy. This is life for us spoonies, though. We pretend to eat, we force ourselves to eat, and we pay the price.
After Thanksgiving, winter rolls around. For those of us not living on the west coast, winter comes with snow, cold, and ice. What this means for a spoonie is fear. The fear of falling, of becoming too cold, of not being able to walk through the snow. Each time we go outside is a calculated risk of "if I fall, my most valuable joint is my neck and trachea, so which joint do I risk in place of that?" Or "if I fall how long will it take to recover? Will I become more sick from the lack of energy" Looking past the danger of winter, there are many things we miss out on. As I stated before we often can't ice skate, or run around outside, or go sledding which is terrible at times. We miss out on so much, and it makes it even worse to watch everyone around us do the things we long to do.
When December 25th finally rolls around, those of us with illnesses are excited about spending time with family. This day is a relief from the reality of our situation. The sad thing about this day is presents. We are constantly asked "what do you want for Christmas?" The truth is that all I want for Christmas is a new body (along with tickets to Hamilton). I wish that somehow I could be given new collagen, a new nervous system, and a new immune system, but unfortunately it does not look that way. It is a conflicting holiday. I am unbelievably happy with my life every day, but at the same time, it is hard to see everyone around you get everything they want. Where they long for the newest Xbox game, I am 15 and wishing for my health. It is sad, but at the same time, it makes me happy to see those around me happy.
Finally, it is a new year. The thing about New Years is that they are fresh starts. Everyone starts with new goals, new clothes, a new life. Sure, most people abandon this new lifestyle when they see their first donut, but the concept is what counts. The unfortunate thing for those of us that are sick is that we do not even have this opportunity for a fresh start. No matter where we run or who we pay off it comes back to the same useless body.
Looking past all of this, there are good things to the holiday season. It makes us chronically ill happy to see our families happy. It makes us happy to see the world bright with joy on our darkest days. The holidays are an overall happy time. What our families and friends need to understand is that these times are tough. We are going to appear happy because deep down we are, but on the surface, we are crying out. We want to eat that piece of cake or go ice skating or stay up until midnight. The reality is that these activities are not in the cards for us, and all that you can do is understand this and support us.
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