Is it just me or do other Spoonies find themselves recognizing new undertones to the holiday season? Am I wrong when I say I’ve discovered that there are two holiday atmospheres: the one we grew up in and in which most people still exist, and the one we’ve lived in since becoming sick? Have others realized that like every other crevice of your life chronic illness has touched and infected, the season of joy is no longer the beautiful escape it once was?
Am I the only one who finds new meaning in the holiday cards piling up in the mailbox this time of year? Like a coded message, a meaning you can’t decipher until you are sick? After spending the year acutely aware that it feels like everyone else is living a happier, easier life, I receive a card with a bunch of faces smiling out at me and a note wishing me, “health and happiness in the new year.” As someone living with a chronic illness, meaning I will literally never be cured of my disease, I find irony in such a wish unlikely to come true. I find it hard to believe that the sender has any idea what the term “health” really means to someone like me. If they did, they would say, “wishing you a year of tolerable pain,” or “wishing you just enough hope to make it out of bed every morning”.
The fact is, people I haven’t heard from since last December are suddenly remembering me just enough to write my name on an envelope and attach a stamp. All without giving any thought to what the past year has held for me. What the term “chronic” means.
Living with a chronic illness is difficult because, by definition, it has infinite and perpetual control over your life. All aspects of your life. A chronic illness is physical, it is emotional, it is social, it is spiritual. It affects your intellectual aspirations and takes away your vocational abilities. You can’t lock any piece of yourself away, able to keep it safe and free of contamination.
But most difficult is realizing you can’t estimate a date of recovery, because there isn’t one. As much as it makes people uncomfortable to hear that, particularly at a time of year focused on rebirth and the possibilities of the new year, it’s true. Chronic illness warriors live with their burden every day. Every day. Birthdays. Weddings. Anniversaries. Graduations. And yes, during the holidays, too.
For those of us who ascribe to the “Spoon Theory”, we are used to living each day with a finite amount of spoons. That is nothing new. What’s different in the month of December is the holidays which are a grand convergence of stressors. Physical and emotional. In addition to showering and making meals and other daily activities we already have to juggle and prioritize, there are a whole host of additional responsibilities and events we must triage. We become painfully aware of the limitations we must accept and the joys our illness forces us to surrender.
Here are 4 reasons this can be the “Least Wonderful Time of the Year” for those who live with a chronic illness:
With all the delicious food expected at the holidays, from the Thanksgiving feast to Christmas dinner, it can be hard for most to turn down an extra slice of pie and stick to their diet. It’s a season of overindulgences and we as a culture, embrace it. But for myself (and many others), throwing my diagnosis and the food limitations that come with it out the window isn’t an option. Doing so doesn’t just result in a small stomach ache or a couple extra pounds. Rather, it can result in fairly damaging consequences to my body. Because no matter how good it tastes going down, I know I’m going to be paying for it for hours, even days down the line.
Part of living with a chronic illness means taking care of your body in the ways you can. You provide a strong foundation on which to fight the condition that, no matter what lifestyle changes you make, will never fully disappear. For me, this includes respecting my food sensitivities and cutting several foods from my diet. After being diagnosed with chronic Lyme Disease, my restricted food list grew, now including gluten, dairy, sugar and most processed fare.
I’ve learned that most restaurants won’t have options for me and even family hosted events won’t offer a variety to me. I’ve resorted to bringing food from home, ensuring I will have something “safe” to eat. As frustrating as it is, I’ve become accustomed to saying no to certain foods. And most of the year, I can oblige my body’s needs.
But the holidays are difficult. As fall disappears, winter specific foods emerge and all I want is to enjoy a glass of eggnog, grab a candy cane from the gingerbread house, or celebrate with a holiday latte from Starbucks. I watch other guests indulging in the festivities and just want to be a part of it. While I appreciate my mom trying to ease my disappointment and downplay the enjoyment of her meal by saying, “Oh, this cake really isn't good, you wouldn’t want any,” the fact remains, I do. The holidays make it difficult to accept the limitations my body sets and remind me of a time when food wasn’t just nourishment, but an enjoyable experience and when I didn’t have to triple check the ingredients before digging in.
I used to be able to snack on candy and sugary treats. At one time, I celebrated Chanukah by eating oil drenched latkes and chocolate gelt. No longer. My body screams in protest.
It’s another reminder of the reality of living with a chronic illness and a continuation of the rest of the year when I feel unable to participate, have fun, and live a “normal” life. Spoonies have two choices: deny ourselves the joy in a season that is supposed to revolve around joy, or choose to ignore our illness for a few moments and pay the price with increased pain and discomfort later.
2. Expectations and Traditions
Listening to holiday music, decorating a tree, making a snowman, the list goes on. There are many different activities that come with the holidays we look forward to all year long. Our families all have their own traditions, the sweet and the silly, repeated year after year until the season feels odd without them.
You don’t have to convince Spoonies that their lives will change after becoming sick. It is evident all year round in the things they must do and those they no longer can. But this is never more obvious than during the holidays where due to physical, mental, or emotional limitations, our expectations are not met and long-held traditions must be broken.
You are too exhausted to go traipsing through the snow to pick out a Christmas tree, let alone stand around it hanging ornaments and stringing lights. The brain fog that has settled into your mind is too thick for you to address holiday cards without forgetting your own parent’s zip code. With a head so sensitive to sound, there can be no music playing through the house to put you in the holiday mood and with such aching joints, there will definitely be no dancing around while you bake cookies in the shapes of snowflakes and gingerbread men.
But just because we Spoonies can’t participate in the festivities doesn’t mean the rest of the world stops its merriment. From our place on the sideline, we watch the landscape outside the windows turn into a winter wonderland and houses become a light display spectacular. It is hard not to feel like we’re missing out, disappointed because while this commercialized version of Christmas isn’t what the holiday is all about, the stockings hung by the fireplace with care and the chestnuts roasting on an open fire are the expectation we have all come to have.
And when expectations aren’t met, particularly as a result of our bodies, it is easy to feel like illness takes everything good away, yet again.
Believe me, I know. Every year on New Year’s Eve, my family and I have cheese and chocolate fondue as we ring in the new year. It’s our own special tradition. Last year, I had been diagnosed with Lyme for less than a month when the holiday came around and still I was desperate to keep up our custom, a piece of the celebration we always looked forward to. So despite how awful I felt, we laid out the fondue set anyway. But within minutes of eating, I was sick to my stomach and spent much of the rest of the evening hunched over a bucket, ready to hurl at a moment’s notice.
I was already having difficult accepting that Lyme Disease was taking treasured pieces of my life away. Losing a favorite tradition and piece of normal filled my holiday with more disappointment.
Don’t get me wrong, many can and do find the pieces of the holiday they can hold on to, the traditions that don’t have to be lost or can be modified in the face of chronic illness. Often, watching Christmas movies in bed can still be accomplished or instead of walking down the street to gaze at lights, Spoonies will opt for a viewing from the comfort of their car. But having to compromise in the first place is still a difficult choice to have to make.
There can also be a feeling of guilt that comes with being unable to partake in the holiday festivities. A regret that something you once enjoyed so much is now out of reach. Not only for you, but perhaps for your family, too. That you don’t have the strength to take your kids to the mall to visit Santa or must turn down an invitation to the annual holiday party because you’re living in the midst of a horrific flare.
Sometimes, in the midst of it all, we forget that our inability to meet individual and outward expectations is no fault of our own, but, rather, a sad truth of living with chronic illness. Let us not fall victim to the easy trap of feeling guilty or ashamed for how we live our lives (and celebrate the holidays), when there should only be one expectation of a chronic illness warrior: to do the best they can.
The holidays are a difficult reminder that life is no longer what it once was and no matter how you might try to ignore the affect chronic illness can have on you and your family, expectations are impossible. Because if there is one thing you can anticipate about being chronically sick, it’s to expect the unexpected.
3. Family and Friends
There is a reason it is called, “quality family time”. Because there can only be so much “quality” time before it is no longer such and should just be called stress.
It’s the honest truth to acknowledge that there can be too much togetherness, particularly around the holidays. For Spoonies, the tolerance level is much lower than normal.
Very often, one of the symptoms those who are chronically ill must face is extreme fatigue, even without completing arduous tasks. Having a group of relatives over to the house leads to the want to tidy up beforehand and prepare for their visit, chores that only aggravate the fatigue experienced. Or should Spoonies decide to make the trip themselves, the list of responsibilities only exponentially grows as they must pack up everything they will need, all before the actual traveling itself. This adds to the level of stress on individuals’ bodies and the exhaustion becomes even worse than before.
But, should we choose to put the health of our minds and bodies before the feelings of our friends and family, trouble lies there, too. By not joining the holiday get-together or keeping our own celebration more intimate, we risk offending those who don’t understand the reality of the pain we are facing. And this tight-rope walk only generates, you guessed it, more stress.
Even once the holiday celebration begins, it is only the beginning of the irritants. Those who suffer from chronic illnesses often find themselves dodging such comments as, “you seem like you’re feeling so much better”, “are you sure you’re not just depressed?” or relatives trying to sell them on any number of diagnoses they’ve read on the internet.
While I’m sure some mean well, their misinformed information is not helpful.
Furthermore, leaving home and being out of your normal routine and habitat makes it difficult to take care of yourself to the degree needed when you are living with a chronic illness. Predictability and the familiar are your friends. You find your comfort zone and live in it, because straying outside the lines means risking the possibility of it being the wrong choice. Because even when you do eat the same foods and get the same hours of sleep and follow the favored plan of your body, you can still feel sick.
Being routined means you aren't always able to participate in the fun. And relatives are not always as understanding when you must distance yourself from the holiday merrymaking. They want to have joy and revel in the holiday spirit, a time of year that is dedicated to letting loose. Including chronic illness at a holiday celebration means having the reminder of a part of life that is not bright and shiny.
But if there is anything that is worse than being forced to explain and defend my diagnosis, it’s my illness being ignored entirely. Watching as it is swept under the rug and I am discarded with it.
And when my family asks what I want for the holidays, the answer I want to give is this: That the gift I really want, my health, is not something you can give me. You won’t find it in any store and no amount of money will cover its cost.
But what you can give me is your companionship. What you can provide is your time. What you can gift, is your love.
4. Passing Time
As someone living with a chronic illness, one I spent the entirety of this year and part of the one before it actively fighting, one of my biggest fears is losing time. Of looking back and realizing I’ve lost years of my life to illness, time I will never get back.
This past year came and went so quickly there are spots in my memory where it almost blurs together. There are months that run into each other and I couldn’t tell you anything specific about those days because there’s nothing special to share.
You can measure time in any way you please: seconds, hours, days, weeks. I can calculate my illness in blood draws, prescription drugs, the number of doctors I’ve seen.
There are so many markers of passing time as the seasons change and birthdays pass. And it is the arrival of the holidays that serves as another reminder of the ever ticking clock. All adding up to another year that will soon expire.
It feels like just yesterday I was looking forward to 2016 with a sense of desperate hope that this would be the year my illness was defeated, providing relief from my symptoms that were so severely debilitating. Now with Thanksgiving having passed and Christmas just around the corner, I see the end of this year looming large and still there is no finish line in sight. I don’t know how much further I must journey to reach the end.
But what I do know is that as difficult as the days can be, no matter how much I believe I will never feel better, I could not have imagined all this year had in store. And no one can tell for certain what this next one will bring.