Why Halloween Is Painful for Me as Someone With Chronic Illnesses
Ah, Halloween… memories of costume parties and parades at elementary school, (lots of) candy, the excitement of planning and putting together a costume, carving pumpkins, trick-or-treating long into the night… it puts a smile on any nostalgic Halloween lover’s face. I am fortunate enough to have memories like these of my own, but as I’ve gotten older, they have been tainted by illness. As a child, without fail, I would always get sick with something around Halloween (I have now been diagnosed with Ehlers-Danlos syndrome and many other illnesses. Looking back, I realize I should have been suspicious of those frequent infections and constant general health issues). I always worried it would affect the big night, but I usually persevered. Debuting my costume and the prospect of candy were too important to pass up!
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
The last time I went trick-or-treating was four years ago, when I was 15 years old. That’s not bad, considering I’m almost 20, but it was the year that followed that really began to color my perception of Halloween. It was October 31, 2013, and after school I went to a new doctor who was helping me improve my body’s methylation process, since I have a mutation in my MTHFR gene. He gave me a dose of an IV supplement and I was on my way, scheduled to be back in a few days. At this point, it was my junior year in high school and I had been severely ill for about five years.
I didn’t have any plans that night since I was too tired from treatment, but I was looking forward to seeing the neighborhood trick-or-treaters as they came to our door. As the night wore on, I could feel my pulse in my head getting stronger and stronger, like somebody pounding their fists against the inside of my skull. Before long I couldn’t keep my eyes open and or even walk from the excruciating pain. My attempts to sleep it off failed, and thus began a series of emergency room visits to control the intractable headache that has been with me since 2012. A week later I received a very painful procedure targeted at helping my head pain, but when it did the opposite, I was hospitalized for a very traumatic week that resulted in zero success in bringing my pain down. To make a long story a bit shorter, every Halloween that passes, I have trouble filling my mind with my fonder childhood memories, and instead I am haunted by that blinding pain, the sterile unfamiliarity of hospitals, very strong and scary drugs, and doctors who throw their hands up, saying, “I don’t know what else to do for you.”
As I deal with these memories, there’s another side to Halloween that hurts just as much: the devastating loneliness and isolation. I miss the best friend I trick-or-treated with nearly every year since grade school. I know my illnesses played a part in losing her. Slowly we stopped talking, but I never really figured out why. All I know is that she drifted away when my health did. I’ve stopped receiving invitations from other friends. After graduation, I saw my friends off to college as I stayed home to continue working on my health. Thanks to social media, I got to see Snapchats and Instagrams of the fun they were having when Halloween rolled around. I felt even more left out and out of touch with my peers. As I laid in bed, I wondered, “Why am I here? Shouldn’t I, too, be in college and enjoying this night? Why can’t I have one night where I can dress up and have fun without worrying about the painful payback afterwards?” Now, simply getting into a costume (my favorite part of this holiday) would use all of my “spoons.”
Realistically, I know I can’t spend long nights celebrating in a tightly packed, very loud space. But that isn’t the point. The idea of an invitation is. Of a friend reaching out, knowing that they haven’t forgotten about me and would like my company. The affirmation that they don’t want me to be alone on a holiday is the significant part.
As you may see, I have two main issues surrounding Halloween; the first being my personal trauma of Halloween 2013, and the second being the social isolation. The latter is what I believe many others living with chronic illnesses can relate to. If you’re reading this, and you happen to have a friend who is struggling with any illness, whether it be mental, physical, invisible or visible, I hope my words have shed some light on the loneliness so many of us face not just on this holiday, but the majority of the time. Perhaps you could text that friend or give them a call, and ask them if they’re free and would be interested in joining you for Halloween festivities. Don’t worry about their response based on plans you’ve made in the past. It’s possible that your friend might have to cancel last minute, or they may have to leave the party early, but the fact that you included them is what will make this difficult battle a little bit easier. If they couldn’t make it, even a quick delivery of (allergy friendly if applicable!) candy or seasonal treats the next day would be incredibly appreciated.
We all need a friend and a sense of community in life, regardless of our situation. Nobody should feel left out. So let’s try to work on making sure every friend is extended an invitation this year. Thank you for joining me in reminding everyone that they’ve got a friend on any given day, including Halloween.
I am an artist, nature lover, animal lover and advocate living in Pennsylvania. Some of my diagnoses include Ehlers-Danlos syndrome, dystautonomia, ME/CFS, chronic Lyme disease, anxiety and depression. As I navigate and learn to accept life with these conditions, I hope to raise awareness and spark meaningful conversation about both physical and mental illnesses in order to erase the stigmas and misunderstanding surrounding them. And most importantly, I strive to lift up my fellow spoonies with love and the message: “I am with you in this.”
madeline-reilly