Social media can be a blessing and a curse for those of us with chronic and rare diseases. It connected me to the recent birth of my niece when my body wasn’t up to making the trip to meet her. It also reminds me of all the ways that I am not enough. It allows me to find my tribe of fellow patients, but then shames me for not meeting that milestone standard of where my health friends are.
Soon enough, my social media feeds will fill with New Year’s Resolutions (and daily updates) ranging from “going back to school” to “I’m really going to quit smoking this time!” But most of them will center around joining the gym.
Mine will not be one of them. Don’t get me wrong. I would love nothing more than to hit the gym, work up a good sweat and get back down to a size four. But that is not my current reality. These days, the “light stretching” of physical therapy leaves me worn out for days. And for those of us battling rare and chronic diseases (and all the fun that comes with them), every day that we are still here to fight is a gift to be celebrated. In the process of complete bodily failure, we’ve learned just how far we can push ourselves. Our fight requires the right resources that our healthy counterparts may never have to consider: extensive rest, medical care, support, maybe some comfy pajamas, and—for me—physical therapy to prevent further deconditioning. For most of us, three-hours of resistance training a week would be laughable, right up until it landed us in the ER.
So what will be on my list of things that I hope to accomplish in this new year?
- I want to make more of a connection. Whether it’s sending a quick check-in text or inviting someone over (even though I’m in my pajamas and the house is a mess), I want to spend more time connecting to the people in my world. Sickness has this way of isolating us, of making us feel like we are the only one. Suffering and pain can lie to us, and tell us we are all alone. At times, it can feel like loneliness is the sole constant companion of the chronically ill. This year, I want to spend more time enjoying the amazing people in my world who remind me I am not alone.
- I want to know that I’m enough. There are so many glaring accusations that I am not enough. Everywhere I turn, some advertisement or some image is saying, “You can’t do as much as me!” or “You can’t do things as well as me!” Even well-meaning (albeit clueless) friends with their “But if you would just try this or that, if you would just be more positive,” making me feel as though illness is somehow my fault. Before I know it, these incriminating statements are adding up to what feels like the truth of the matter, that I am not enough. So, this year, I want to spend more time refuting the lie of “not enough.” I hope to remind myself that the race I am running doesn’t have to look like anyone else’s as long as I run it well.
- I want to be successful at communicating what it is I need. Every time I think I’ve improved in this area, I realize just how far I have to go. What is it about our culture that so prizes being an island to oneself, never needing or asking for help? Why do we so cling to our illusion of control and independence? Why is there so much judgment when it comes to asking for help, even within the medical community? This year, I hope to continue to lay those myths down, picking up much needed hope, help and community in their place.
What about you? What things will you be focusing on this year? Maybe, like me, you’ve been drowning in doctor’s appointments and trips to the pharmacy and you can’t even remember the last time you did something just for the fun of it. So now is the time, let’s live a little. Invite a friend over. Stay up past eight. Watch the fireworks from outside your bedroom window.
Stacey is an author, goofball and avid reader. You can find her blog at chronicallywhole.com where she endeavors to encourage other warriors like herself along in their journey of battling for health and discovering wholeness. She is mom to Hayden and Avery, stepmom to Julie and wife to Ryan (a smarty pants who works at NASA and logs their whole life on spreadsheets and pie charts, true story!) She has a strange affinity for eating whole meals in bed (don’t tell anyone) and is convinced smelling old books will make her smarter.