A Guide to Navigating the Holidays With A Chronic Illness

The holiday season is finally upon us! It’s the season of food, festivity, family and fun. A time where we celebrate our loved ones and what we’re grateful for…it’s the season of giving and of recieving. But let’s be honest, it can be a very real reminder of a very difficult reality that we’re living. For people with a chronic illnesses the holiday season is the season of reminders, reminders of where we were in the years before this, reminders of traditions that have changed, reminders of the company that has come and gone, and reminders of what truly matters in each day. It’s not the easiest to navigate, so here’s some tips to get you through the holidays.

1. Before you do anything: give yourself permission

The holidays are notorious for the hustle and bustle of holiday gatherings with friends, families, co-workers, an then some, delivering gifts and checking off every item on your list of gifts to purchase. It’s exhausting and busy for those with normal energy levels, and we know it’s even more exhausting for us. So give yourself permission–allow yourself to sleep in an extra hour, to only drop by the party instead of staying all night, to not go to that party at all, to not eat that dish that your aunt keeps pressuring you to eat even though you know you’ll pay for it later. Give yourself permission to take time for yourself and your body without feeling guilty about it, or bad about yourself. Our chronic debilitating illnesses don’t take time off, they don’t disappear for the holidays and I swear that my symptoms are actually worse but that’s just the way the cookie crumbles. You are allowed to gift yourself this season, and do that in any way your heart desires.

2. Plan ahead

Two words: brain fog. Let’s face it, for one reason or another we’ve all done something and later realized that you have no recollection of doing it or gotten a call for an appointment that we don’t remember booking. Get a calendar, I have a really big one that’s constantly in my face right next to my bed. I purposely made sure it was obnoxiously big so that way the second I stepped out of bed in the morning I would see what I had planned for that day, it’s saved me from missing a lot of appointments and lunch dates and is my saving grace during busy times. If you’re anything like me you’ll find a deep satisfaction in colour coding all of the events you plan. If you’re not into the obnoxiously big ordeal, get a small pocketbook calendar that you can look at every day.

3. Be in the moment

There’s so much that happens during the holidays and I frequently find myself getting overwhelmed with all I have to get through, my solution to this is to remind myself to live moment-to-moment. Focus on playing with your nieces and nephews, or on baking cookies with your grandmother. Focus on the atmosphere, how for once people are so happy to be together. This moment is all we’re guaranteed and we know all too well how our health can change at the drop of a hat so enjoy it. Don’t get caught up in what tomorrow has to bring, or what you have to get through in a weeks time. All you can do is get through right now.

4. Remember the sentiment of a handmade gift

I’m going to talk about the elephant in the room: finances. I have been unable to work for over a year now, and I know that even though my heart is giving my bank account is not. I’ve always said that if I was a millionaire, I’d be a millionaire for a day because there are too many people who deserve good things in the ugly of today that don’t get it. With that being said I know that I would prefer a handwritten letter from someone, instead of a gift anyday. We, as a society, need to work on getting the materialistic aspect not associated with the holidays. Don’t feel guilty about DIY gifting, excercise your crafting ability, write a letter, create a book of the reasons why you love said person. The gift doesn’t need to be worth hundreds of dollars to be memorable, so don’t stress your bank account out by trying to make everyone else happy. The truth is that those who love you don’t expect a gift from you, I know I don’t expect that of my loved ones. Even on the people that you absolutely feel inclined to gift, don’t hesitate to take advantage of online shopping and bargain websites. You wont remember how much the gift was when you look back on the memory, but you’ll remember how the gift made you feel.

5. Gift yourself a nap, or a bath

Seriously, treat yourself. If you’re tired take a nap, don’t push yourself to the breaking point because then you will miss out on far more than what you will during a two hour nap, or a soak in the tub. Remember to include days to rest and recouperate. Remember that promise you made in #1, in the season of thinking of those you love don’t forget to take care of yourself. Who knows, maybe you can make a gift out of it and take your best friend to the spa and tag along for a facial.

6. Bring your safe food to parties

As someone with mast cell disease, I need to stay on a strict diet of things that I’m not allergic to. A lot of the holiday celebrations and traditions are geared towards eating, and if someone is unable to eat that can lead to a lot of isolation. So if you have foods you are able to eat don’t hesitate to bring them with you to the party! Try making it a dish that everyone can eat as well and bring it along with you if you’re not looking to draw attention to yourself. The important thing to remember is that even though I am 100% supportive of treating yourself to the food you’re craving just be mindful of the response you’ll get from your body in the days to come. Indulge with caution.

7. Don’t be afraid to say no

On the topic of food, there’s only so much that you can take. If sitting at a table watching people eat, or standing around refusing appetizers as they are passed around is getting tiring then don’t be afraid to say no to the next event. If you know that you have a threshold of how much you can take, respect that! The definition of insanity is doing the same thing over and over and expecting a different result. So don’t drive yourself to the brink of insanity trying to make dinner parties work. Plan them few and far between, unless you aren’t affected by food than definitely enjoy and enjoy a little extra for those of us that can’t.

8. Starting new traditions are just as great as the old

For me personally, one of the hardest things (or sometimes rewarding, it’s a catch 22) is comparing where I was last year to where I am this year. Sometimes that can bring a lot of pain, sometimes it can bring redemption, sometimes it brings a sense of accomplishment. That’s the thing about time, is that with time there is change and that change may not always be good. So when this year comes around the traditions that you grew up on or that you’ve always done very well may not be able to be maintained, but dont beat yourself up. Traditions are created every year, and creating a new one to replace the old isn’t the end of the world! Creating new traditions is just as exciting as carrying out the old. So much has changed since last year, celebrate it!

9. Reflecting doesn’t have to be ridiculing

When the new year rolls around everyone hops on the resolution and reflection train, the resolutions stick for a month (if you’re lucky, and then we’re back to the same old). Maybe you can call me a perpetual pessemist, I like to call myself a realist…but I tend to go straight to the negative. I recount all the bad things that happened in the year, I like to think that I do that to create a new found hope for the year ahead but this year make it a point to focus on the positive. Think of all the great things that happened this year, focus on the victories, on the company you enjoyed, the new faces you met, the new hearts you got to know, the adventures you embarked on, the simple things you came to appreciate, the lessons you’ve learned, the gifts you’ve been given, the knowledge you’ve gained…there is so much to celebrate, so much about you to celebrate.

10. Pat yourself on the back

You did it. You got through another 366 days, another year. You overcame every hurdle that was in your way, you fought every symptom, you got through each day–even the ones that you thought you couldn’t. You have lived another year; a year was filled with laughs and tears, with victories and losses, with hellos and goodbyes. Not every day was easy, not every day was guaranteed; I know there were many where I questioned my ability to perservere but I was proved wrong. Applaud yourself for that, because we both know that wasn’t easy. The demons you fight are relentless, they are strong, they are willing, they are persistent…but you are stronger, you are more willing, you are even more persistent. Take this time to look at the happiness that’s around you, the love that you’re surrounded by, the reasons that you fight…look not at the ugly, but at the beauty that remains despite of it.

Like all things this holiday season is temporary so embrace every second, even the frustrating ones. Let this time be a reminder of all of the love that you’re surrounded by, the things and people that have remained constant even in a whirlwind of a life that changes every day. You are here for a reason, you are loved for multiple reasons. Your illness may take up majority of your energy, your days may be more difficult than easy, but you my darling…you are powerful beyond measure. I hope that you spend this season in the company of those you love most in this world.

Happy Holidays, my fellow warrior. Here’s to another year of overcoming the odds stacked against us.

To Anyone Whose Birthday is a Painful Reminder of Their Illness

You close your eyes the night before with butterflies in your stomach, knowing that when you wake in the morning it will be the day you’ve waited for all year. It’s your birthday. It’s one of the only days that the sound of your alarm clock doesn’t make you cringe and call out for “five more minutes.” You get dressed and put on an outfit that makes you feel good, and are greeted with hugs and kisses from your parents who shower you with messages of happy birthday. Perhaps you’re treated to your favorite breakfast, or look forward to going out to your restaurant of choice for dinner.

You get to school or to work with a smile on your face and your day is filled with hugs and kisses and well wishes. Your phone is constantly going off with text messages, tweets, Instagram posts and phone calls from people reminding you of how loved and appreciated you are. As the day winds down you can’t help but feel a little bit sad that your day is coming to an end, but you gather with friends and family around your favorite flavor of cupcakes or cake and smile as they sing happy birthday to you. You close your eyes and quietly whisper to yourself a wish to be fulfilled in the days to come, and then you blow out your candles making sure to tell no one so it will come true.

When I was 9 I wished for an American Girl doll, when I was 12 I wished for a solo in dance, when I was 14 I wished for my crush to like me back, when I was 18 I wished for an acceptance to my dream university, and now on my 22nd birthday, I wished to be anywhere but here.

Change is inevitable; as we grow so will our opinions and views on life. However, when you’re thrown into the world of living with a chronic illness things change in ways that you wish they didn’t — like my birthday. I truthfully have never been someone who loved attention, I’m an introvert and quite shy by nature, I was the kid that got so embarrassed she would cry when people sang me happy birthday. I never in my wildest dreams would have imagined that at 22, there would still be tears as I blew out my candles.

My diseases have changed the way that I perceive many things in my life, and it’s made me realize my values and morals and helped me appreciate the little things. As I grew, my birthday no longer became a day of receiving gifts and attention, but a day to be reminded of how loved and appreciated I am by those in my life and a day to celebrate my growth and progress in the past 365 days. Now, my birthday is a bitter reminder of where I could be and where I am not; where there used to be happiness and celebration is now replaced with emptiness and guilt.

Before I fell asleep I made sure to turn my phone on silent so I would sleep through the phone calls that would come in the morning; the phone calls that never came. I truthfully cried more tears on that day than I have cried in a very, very long time. I received heartfelt messages and gestures from people I love dearly, and people I didn’t realize I meant so much to. But I was met with disappointment when I got shorthanded messages, or no messages at all from people who meant so much to me. I buried my head under my blankets, armed myself with tissues, and tried to sleep the day away so I didn’t have to “feel.” I avoided looking at social media outlets — I felt like a failure.

Here I am at 22 years old, celebrating 8,030 days on this Earth, achieving nothing that I had ever dreamed for myself. I am not in school, studying to be a nurse. I am not a nurse, caring for my patients. I am not working, making a living and broadening my experiences. I am merely existing at this point, and dreaming of where I wanted to be. I tried, I tried so hard to make something of my day that would make me happy but when I realized I couldn’t even form a list of friends I wanted to celebrate with, I simply couldn’t bear it. I desperately wanted to be overwhelmed with school work, or stressed with upcoming midterms. I wanted to feel loved, appreciated, and celebrated by my peers. Instead I mourned and grieved where I was supposed to be, and tried to accept where I was.

That day I wrote myself a letter, a letter that I won’t open until my 23rd birthday in another year. Reminding myself that I create my own timeline, society doesn’t get to do that for me and it doesn’t get to do that for you either. The only thing that stands between me and self-acceptance is society; the pressures of where I should be, who I should be, what I should be doing drown out what my heart is telling me. There is no statute of limitations on our dreams or goals, and our birthdays aren’t symbols of that. Our days are already often filled with self-doubt, pain, depression and frustration, but it took me 22 years to realize there is always something good in those days — even in the ones where I don’t wait to get out of bed.

In my letter I reminded myself that my birthday is not a day to scold myself or grieve for what I could have had, and where I should have been. It’s a day to celebrate my existence, another year that I made it through hardships and obstacles I didn’t think I would make it through. It’s a day to create new goals, and find ways to attain the ones I couldn’t. It’s a day to be grateful that I bet the odds, that I watched 365 sun rises and sun sets. It’s a reminder that next year if I find myself in the same mindset that I immediately switch my mindset to celebration not degradation.

So if you find yourself stumbling upon this article on your birthday or you find yourself feeling as I did on my birthday, then listen up: at the end of the day I’m not doing all that I dreamed of doing at 22, and you may not be doing what you dreamed you would be doing at this age but that does not change how grateful I am to be here, or how grateful I am that you’re here. Here we are, 365 days stronger, 365 days wiser, and 365 victories simply because we got through each day. Even if you don’t believe it, there is someone out there celebrating and appreciating your existence. When we’re standing toe-to-toe with reality, we can do one of two things; we can break and become undone at where we should be, or we can celebrate all the growth that resulted from the hardship we’ve endured all year.

Things have changed as I’ve grown, but one thing that has remained the same is that I am hopeful; hopeful for a better tomorrow, a kinder heart, more love in my life, and attainable ambitions. People may not always understand the way you feel, and may not always say the right things, but I promise you that your existence and growth over this last year is appreciated, it is important, and it is celebrated.

In each day there is something to celebrate; some days it can be as simplistic as getting out of bed but other days it can be a celebration of great magnitude. Birthdays are just that; they are no longer a symbol of where you were versus where you are and wanted to be, but a celebration of your mere existence. I ended my day surrounded by my family, blowing out the candles atop of the cake I couldn’t eat… and although I can’t tell you, I’m confident that you know what I wished for this year.