Chronic Illness, Loss, & Forming New Holiday Traditions

One of the hardest aspects of chronic illness is saying goodbye to hobbies and interests.  Some of us have even been forced to say goodbye to our occupations.  A friend of mine with lupus and bipolar disorder was forced to quit her successful career of thirty years (she was an engineer) after an accident.  Her body was never the same.  With chronic illness, we engage in a mourning process that is never quite over.  (I wrote about this in, Who Am I? The Chronically ill Person’s Identity Crisis.)  Around the holidays, though, this sense of loss is more pronounced.  Sometimes, I feel a sharp pain as I reflect on happy memories of Christmases past and think about things I used to do, how I used to be more active, and friends who left as soon as I was diagnosed with myasthenia gravis in 2008.  These are friends I celebrated every Christmas with for years.  Even though I know I’ve grown in some ways after getting sick (being less materialistic, for instance), a part of me died seven years ago.  But being sick has given me a greater appreciation for friends who stick by me and new traditions.  And I do look forward to Christmas and New Year’s Eve this year. Speaking of which, are you coming to my 3rd Annual Online Twilight Zone New Year’s Eve Party this year?

Gingerbread Time = Family Time
Gingerbread Time = Family Time

Old Friends And New Traditions

Before I got sick, I used to throw a Christmas party every year for my friends from high school–I usually cooked a six-course dinner.  The last Christmas pre-myasthenia was my favorite one; I threw a sock hop set in 1962.  Some people may think this is stressful but I enjoyed cooking, throwing parties, and life in general.  It was usually between twelve to fifteen of us.  I tried my best–a couple of times since getting sick, I’ve thrown small Christmas parties.  Even though I didn’t cook, it was still too much for me.  I know that throwing a party isn’t in everyone’s skill set.  Still, it would be nice if some of those guests would call around the holidays and say, hey, Jessica let’s have lunch.

Thankfully, a few friends do take that initiative.  My friends Pat and Amanda are one of the best examples.  Pat and I have been friends since high school.  He and Amanda have been married for six years.  Ironically, before I got sick with myasthenia (one day when I was bedridden because of polycystic ovarian syndrome), Pat told me was “not a planner” but he would always come when I needed him.  He and Amanda see how exhausted I am.  They visit, do stuff with me, and call every few months to see how I’m doing.  Being sick has given me a greater appreciation for friends who go above and beyond.

This year, as I was getting ready for the holidays, I realized that my family and I have developed new traditions over the past few years.  Every Christmas, my mom, my nephews, and I bake gingerbread cookies.  The boys, Mikko and Tyson, just turned 8 and 11, respectively.  Even though the gingerbread house never looks like the one on the box, we always have fun.  We look forward to baking every year.

Online Communities for People Who Are Sick

There are many online communities for people who are sick.  This year, I’ve sent Hannukah and Christmas cards to friends I met online.  In some of my online groups, I’ve seen people exchange secret Santa gifts.  For years, I would spend New Year’s Eve alone crying in pain watching SyFy’s two-day Twilight Zone marathon.  I usually spent the holiday bedridden due to the pain from both the PCOS and the myasthenia gravis.  Additionally, I had to consider my bedtime for bipolar disorder.  With all these illnesses, I can’t drink alcohol.  In 2013, I had this idea that no one should have to spend New Year’s Eve alone (unless they want to).  I started our first online NYE party during SyFy’s marathon.  I figured two people would show up; fifty guests attended on Facebook.  While watching episodes live (either on cable or online), we would post comments on Facebook.  At our last NYE party, 175 guests attended from seven different continents.  SyFy also hosts 24-hour marathons on the Fourth of July so we also have parties on that holiday.  I’ve written recaps of all the parties we’ve had so far:

At our last party, while watching episodes live and posting comments on Facebook, we also posted pictures of what we are eating creating a “virtual potluck.”  This year, Rod Serling’s daughter, Anne Serling, and I will be collaborating to make this year’s celebration bigger than ever.  Anne is the author of As I Knew Him: My Dad, Rod Serling.

Join Me in The Zone!
Join Me in The Zone!

Would Love to See You on New Year’s Eve

If you’re interested in coming to this year’s party, RSVP here.  This is where we post comments during the actual party.  You can also post questions there.  I’d love to see you at the party even if you can only stay for one or two episodes.

UPDATE: Fashionably ill Readers’ 32 Favorite Holiday Movies

Stay tuned!  In my next blog post, I’ll be sharing a list of Fashionably ill readers’ favorite holiday movies.  If you want to add your movie(s) to the list, join us here on Facebook.

Related: 3 Tips on Celebrating a Holiday Alone

–Your Stylist, Jessica Gimeno

 

JessicaGimeno

Hi, I have five illnesses--bipolar disorder, myasthenia gravis (neuromuscular autoimmune disease), polycystic ovarian syndrome, asthma, and psoriasis. Most of the organs in my body are affected. I'm dedicated to being a stylist for sick women. As someone who has experienced changes in my appearance due to my 12 meds (including Prednisone), I know how hard it can be when your face and body change overnight. (In fact, because of treatment, between 2008 to 2010, I went from a size 0 to a size 10. While I lost the weight, there are permanent changes in my face and body, which I've grown to appreciate.) My blog will also help women deal with other issues like surviving chronic pain and fatigue. Healthy people can also use this blog as a window into what life with illness is like. Let this website be a place where we can draw strength from each other despite our illnesses and find solutions to our everyday challenges!

One thought on “Chronic Illness, Loss, & Forming New Holiday Traditions

  • December 2, 2015 at 7:04 am
    Permalink

    The holidays with chronic illness can be so hard. There are so many traditions that involve parties, late nights, alcohol, foods that can make illness worse, and if you can’t participate in these, people often see you as a “party pooper.” I too, would love for a friend to say “I understand why you can’t come to my party (that’s going to cause you severe anxiety), but why don’t we grab coffee and catch up. Or even “come over and help me decorate my tree (if that’s your chosen holiday tradition).” I wish I could teleport all of my online chronic illness community friends into on space – teleport because long travel is too tough for many with illness 🙂 – and do a “We’re chronically ill but we’re still fun” gathering that focuses on those things we can do and enjoy!

    Reply

Leave a Reply

Your email address will not be published. Required fields are marked *