My Battle Plan for Facing the Holidays With a Chronic Illness

Becoming chronically ill has made me very socially awkward. I mean, I was never super suave before, but I am a hot mess now. I never know how to answer the inevitable “how are you doing?” that comes up at the many holiday functions. The tone, the sad eyes looking at you like you are a dying kitten is just too much. I know most people mean well, and some may genuinely want to know what is going on, but I am tired of being the centerpiece, the inspiring sick person everyone needs an update on. Slide over well-placed floral arrangements and just pop me up on the table.

I am not sure anyone really wants to know the whole nine yards, so I start by giving them a summary of surgeries and if they helped or did not help. Before I know it, I have jumped down the medical rabbit hole and have taught a mini class on Ehlers-Danlos syndrome, Chiari malformation or dysautonomia. There are graphs, pie charts, dry erase boards and the full-size model of a skeleton I keep in my bag for social situations. Then before you know it I have put everyone to sleep faster than the tryptophan in the turkey. Dang, I have done it again.

I do not feel like a normal person anymore. I used to be loud and fun. I taught Sunday school and chased 4- and 5-year olds around. I volunteered and socialized. I told jokes and danced. I used to know how to interact with the general public before getting sick. Now, I worry about leaving the house too long and what I will do if I get struck with multiple symptoms. I am always the one to leave events early and I am at the point where I just want to slink out without saying goodbye. Because I always hear “it’s OK, I know you must be feeling bad.” Sometimes I am feeling rotten and sometimes I feel so much like an alien that I want to return to my safe spaceship that is stocked with medication and heating pads.

This last holiday dinner had me really thinking about how to alleviate this social anxiety after it took four of my relatives to make sure I got to the car without falling. I was slightly mortified. Granted, a big bottle of anti-anxiety meds would help but something tells me that could cause a host of new, unwanted, awkward conversations. So, I am coming up with a plan. A battle plan, if you will.

1. Prepare a bag. 

My husband always used to say that failing to prepare is preparing to fail. It used to warrant an eye roll from me, but here I am, calling on his wisdom. We will not mention that to him. Things that may go in the bag will be hydration packets, a small container of a few of each of any as-needed medications, water, a sweater, a tank top (because I go from hot to cold to hot to cold to hot to cold and so on in .75 seconds), my favorite braces or the ones I am most likely to need, those little warm hand packs, Ace bandage, band-aids and my emotional support animal. (Just kidding on that last one, my cat would not likely oblige me.) You can put whatever suits your needs as we are all different. Chargers, batteries, extra port supplies, heart monitor and things of this nature.

2. Have a list of topics other than my health. 

This one is huge! I am the novelty, the special little zebra unicorn who is interesting for the first 10 seconds. Then like a toddler who sees something shiny, I am no longer interesting. Lots of people have topics prepared for social events and this is no different. I also would like to stress that you may have to be prepared with creative ways to divert the conversation away from your health every time someone new walks in the door. Brush up on the latest local events and news stories, stalk your family’s social media posts so you have a general idea of what is going on in their lives, talk about new TV shows or movies (I know we can all binge-watch the crap out of some Netflix) or ask questions about their lives and say “hmmm” and “yes” a lot.  Just kidding, you should listen and respond appropriately.

3. Always have an exit plan!!  

This, my friends, is important. Having an exit plan, other than not feeling well, is a must. Even if you are not feeling well. At least for me, I know it is always the fall-back plan. If my husband wants to leave an event, he can always say I need him. Which is sometimes the case. Obviously, sometimes we are feeling pretty bad and it’s OK to admit that, but wouldn’t it be nice to have some other phrases lined up? Like strategically planning your grocery shopping after the event in question…

4. Food

I know I have a love/hate relationship with food and most gatherings are centered around it. I have gone months not being able to eat and it was torture. Everyone is always trying to feed you. Some of us have strict
dietary restrictions we must adhere to or things can go very bad, very quick. If this is the case, try to bring a dish you know you can eat/nibble on. The company you are around will still probably try to force-feed you, but you can always say you are not that hungry. It is OK to leave it at that. If they push, which some will, just say it’s health-related and shut it down. You do not have to explain. Let it roll off your back and try to remember they may not have any couth and live in ignorance.

So, this is my battle plan. It is simple and uncomplicated, and I hope it works. I plan to implement it during Christmas to see if it passes the acid test. I also hope it helps some of you. This is a difficult time of year for many people and even more challenging for those of us with a chronic illness. I would love to hear some of your strategies on avoiding the topic of your health and making it through the holiday events. I want to stress that there is nothing wrong with sharing about your struggles with the
people you love. However, sometimes I find it can be the only thing I know to talk about anymore and that can be a drag. The uncomfortable “trail off” in a conversation is an indicator. I do not want to be Debbie Downer or Negative Nancy. I want to be Resilient Reanna, the Marveling Mother and the Witty Wife. So cheers to your holiday and good luck on the battleground. Please do not break a leg.

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Photo via Ryan McVay on Getty Images