My body and my life aren’t perfect, but they’re mine. And that, to me, is beautiful.
I missed my deadline for the article you’re reading.
No, really. I did.
You see, rheumatoid arthritis (RA) can be unpredictable. Pain, flares, and sickness can pop up out of nowhere — derailing life, ruining plans, causing frustration, and making me appear flaky or unreliable.
One of the most challenging parts of living with chronic illness is that unpredictability. The loss of “control.” In some cases, there’s also a loss of autonomy over the body. A loss of choice.
Despite choices being taken away, challenges being faced, frustrations popping up, and deadlines being missed, I persevere.
People always ask me how I do it, as though I have a choice. I don’t feel that I do. My only choice is to keep on keeping on. And I try to do so, whenever possible, with a smile on my face.
I’m under no illusions that life with RA is all rainbows and butterflies. But, I ascribe to the mantra “living a positive life while chronically ill,” and that positivity and fortitude feels more necessary now than it ever has.
I’ve lived with rheumatoid arthritis since childhood. In middle school, I was diagnosed with polyarticular juvenile rheumatoid arthritis, now called juvenile idiopathic arthritis, after having some symptoms for years prior.
I live with a heart arrhythmia from an autonomic nervous system condition called postural orthostatic tachycardia syndrome (POTS), and I’ve dealt with a bout of drug-induced lupus. I also have osteopenia and Sjögren’s syndrome, which are common comorbidities of RA.
It’s a lot.
Despite my diagnoses, I have learned to make the best of my situation. I choose humor; I choose to be positive; I choose to work at it.
Don’t get me wrong, none of this is easy. Choosing willful optimism in a time of illness or adversity takes grit, fortitude, faith, and resilience. It’s basically a full-time job.
Some days you have to dig deep, especially when it feels like things cannot get any worse. Some days, the pain or sickness simply will win. That’s just reality.
But my approach, since I was old enough to be cognizant of it, is to just make the best of every day.
Some days, living positively means just getting out of bed with the hope that the day, week, month, or year will get better.
Other days, positivity looks like kayaking with my rescue pup, doing a virtual reality workout, taking a hip-hop class, going to a concert, hiking, or birdwatching in the woods.
Positivity can sometimes be completing seemingly simple tasks that, for RA patients, sometimes feel impossible: making the bed, drying your hair, walking your dog, feeding your cats, cooking dinner for your family, driving your car, typing, sleeping, texting a friend, or taking a shower.
RA is a serious, costly, and at times debilitating medical condition — there’s no two ways about it.
Some days I miss deadlines and cry and lay on my couch with ice packs and heating pads and anger.
Living positively in the face of all that is not about wearing proverbial rose-colored glasses. It’s about making the best of the cards we’ve been dealt, with whatever energy we can devote to it on any given day.
It’s about being humble and gracious in knowing that our best could look different day to day or hour to hour.
Don’t get me wrong, overt “fake” optimism isn’t good. The culture of toxic positivity — or pretending everything is OK when it isn’t — is rampant.
While a mindset oriented toward optimism may benefit the mental health of people living with chronic illness, it’s important to give yourself the time and space to feel whatever it is you’re feeling, even if it isn’t all good vibes all the time.
Being ill is not something most would wish for, but living with an illness or disability is also nothing to be ashamed of.
We’re allowed to feel however we feel about our condition on any day, because those feelings are nuanced and complex. They might change, and that’s fine and to be expected.
Like our symptoms, our feelings about our health and our bodies may ebb and flow, lull and flare.
I ride those waves — and I have since childhood.
I miss high heels. I miss playing softball. I get really, really mad that my hands make playing guitar, ukulele, and piano more difficult.
I have cried from pain, cried about medication side effects, cried about the fact that RA is, as of now, incurable and lifelong. I have cried that it impacted my career choices early on.
I worry that my already-bad joints will get worse.
I stress when I miss deadlines, have to take a sick day at work, or when I go a few days without exercise.
I am scared of COVID-19. I am scared of what this autoimmune disease has done to my body’s ability to defend itself from harmful viruses.
I fret about healthcare in the United States, about drug prices, about legislation, about rights for disabled people and women and oppressed communities.
I get mad that my body feels like it hates me sometimes.
Despite everything my illnesses have thrown my way, I triumph.
I choose to find beauty. I choose to find things to be grateful for each and every day. I look at all the blessings around me and know that I am so much more than my illness.
This is what I mean by living a positive life while chronically ill. My body and my life aren’t perfect — but they’re mine. And that, to me, is beautiful.
How will you find your beauty today?
Ashley Boynes-Shuck is an author, advocate, and health coach based in Pittsburgh, PA. Despite living with RA for 25 years, and having other medical conditions too, Ashley has spoken to Congress, published 3 books, and even been tweeted by Oprah! She works for a tech startup, is a pet mom to 3 dogs, and enjoys birdwatching, concerts, playing instruments, and travel. In her free time she writes poetry and goes hiking with her American Ninja Warrior/schoolteacher husband Mike. Find her on LinkedIn or Instagram.