I have celiac disease. I have fibromyalgia. And, most days, I feel like a badass, chronic illnesses and all.
Lately, though, living with chronic illness has felt harder than usual. The biggest challenge? Chronic fatigue from fibromyalgia is hitting me extra hard. I know I should expect it; I have less than two weeks left in my first semester of grad school, and I always start feeling majorly burned out by this time in the school year.
Expecting to not want to do anything on the weekends but stay in my warm bed and sleep doesn’t make the reality of those feelings any easier, though. Just like expecting to make silly mistakes – like publishing a sponsored blog post with the wrong photo in the main picture or having a mind fart while teaching class and seeing 23 confused pairs of student eyes staring back at me – doesn’t make brain fog any less frustrating.
I know I’m probably not the only fibromyalgia warrior or spoonie struggling a bit right now.
Thanksgiving has passed, which means Christmas is officially in the air. On the positive side, that means it’s time for lots of Christmas cheer and family fun. However, the holiday season is also a time of:
- Countless holiday parties that you might feel too run down to attend with a big smile on your face, or be awkwardly unable to eat at due to celiac disease or other dietary limitations.
- The holiday rush of trying to find the perfect presents, host the perfect parties and be the perfect holiday cook.
- Cold weather (in many places, anyway) that could exacerbate joint pain or other symptoms.
The goal of writing this post isn’t to dampen holiday cheer or throw a pity party. However, I do want to acknowledge for that many chronically ill people, the holiday season can present several challenges…and, sometimes, living with chronic illness might can even make you feel like you’re chronically failing.
Which is why I’m here to remind you what failing doesn’t look like when you live with a chronic illness…
It is not failing if you can’t do the activities everyone else seems to love, whether it’s going to late-night parties or skiing. You can still enjoy quality time with loved ones in other ways, like by watching silly Christmas movies or having a coffee date.
It is not failing if people don’t understand why you’re different. As a grad student with fibromyalgia, I’ve been battling feelings that I’m “not enough” more than usual lately as people keep asking, “Are you going to *insert event here*?” and I keep shaking my head. I want to get the most out of my grad school experience and go outside of my comfort zone. However, I also know that I have several mandatory self care activities – like making time for food prep and getting at least eight hours of sleep – that most of my classmates can’t relate to.
It is not failing if you have days when living with chronic illness makes you want to cry or scream. Having limitations – no matter what they are – is frustrating. Knowing that many aspects of your life are harder for you than other people can feel downright infuriating. On days when you do hate your chronic illness, accept those feelings. Cry, scream, vent to a friend – do what you need to express yourself and move on.
It is not failing if you make plans and have to cancel them. I know the sickening feeling of waking up on a day when you have some epic plans with friends, and realizing that your body is saying “hell nah!” It sucks having to reschedule or cancel plans. There’s no denying that. However, instead of blaming yourself or hating your chronic illness, try to focus on the easy self care activities that will have you feeling ready for more adventures soon.
It is not failing to turn down projects or to not do as well or as much as you wanted. We all want to be Superman or Wonder Woman. We all want to kick ass at work while having a flourishing social life and a happy family. Sometimes, though, you need to prioritize. Maybe this means you’re going to fewer holiday parties this year so you can truly enjoy the ones you do attend. Maybe this means asking if someone else can host Thanksgiving dinner this year. Although it can feel bittersweet to turn down or cut your responsibilities, this isn’t failing. It’s actually ensuring you can do your best on the responsibilities you’ll have left.
Finally, it is not failing to be different.
It’s unlikely that I’ll ever be a “typical” grad school student. I can’t grab food at whatever fast food place I happen to be nearby. I’ve taken sleeping pills for fibromyalgia-related insomnia since age 11, and they’ll likely always limit my nightlife adventures. And there will be weeks when fatigue and brain fog has me doing the bare minimum of socializing to survive.
But being different or having to do things differently doesn’t mean you are any less of a stellar human being…and having to adjust your holiday season to your body’s needsdoesn’t mean you’ll have any less of a magical time.
If you’ve ever felt like a failure because you have a chronic illness, just know that you aren’t alone and that even the most “adapted” and “veteran” spoonies have battled the same feelings.
And I hope that, after you read this post, you also know that you’re never chronically failing.