In the United States alone there are approximately 1.5 million people living with Rheumatoid Arthritis (RA), with 71 people out of every 100,000 diagnosed each year. It’s very likely you have a family member, a friend or a colleague who lives with this often misunderstood autoimmune disease or you might even admire someone in the public eye that also lives with the condition.
That being said, the RA community is full of individuals who have been thrust into the roles of educators and ambassadors, researchers and advocates as they’ve made their way through their health journeys. From the first appearance of symptoms to the (often long) road to diagnosis and treatment, there’s a lot of learning and a lot of hard-earned wisdom a patient will pick up along the way. Whether it’s coping with the changes that come with finally getting that answer to the “why am I in such pain?” question, navigating a fraught and unequal healthcare system, learning lifestyle changes or normalizing and sharing clutch products that might improve day-to-day life, navigating the ways the often “invisible” illnesses can be misunderstood or ignored by people who don’t get it or finding community among others that share your experiences, there’s so much that everyone can learn from taking the time to really listen to people opening up about their conditions and their stories.
Here are just a few inspiring quotes from people (some you may recognize, others you might not) living with Rheumatoid Arthritis. If you’re looking at a difficult diagnosis (either for yourself or a loved one), we hope you’ll find some hope, humor, wisdom and community ahead.
It’s difficult to say it aloud.
As Laura Torchinsky previously told SheKnows, one of the challenges of her RA diagnosis has been navigating how “invisible” it can be to other people. That can mean needing to find a way to put to words that her need for accomodations is a valid one (particularly if some individuals can’t mind their business) and that can require a deal of vulnerability.
If you haven’t felt heard or seen, you aren’t alone.
People of color and particularly Black women are more likely to feel underrepresented in conversations about chronic pain and RA. Shantana Hazel told SheKnows that she found herself needing to resort to humor to cope with the ways she felt unheard and unseen while seeking care for her RA.
There might be periods of trial and error.
Alexis Mobley, a literal immunologist and researcher, encountered barriers to care for her autoimmune disease. As Black women are more likely to experience medical gaslighting and doctors that fail to listen or believe them about their pain, it’s so important for patients in those situations to know that they deserve to be heard, understood and treated and that it might take time to find the provider who is able to meet them where they’re at.
You’ll redefine your idea of a ‘good day/’
In her powerful essay about navigating motherhood post-diagnosis with RA, writer Katy Anderson shared that the definition off being “well” or being “sick” totally shifted for her when she started to view them through the lens of her chronic illness.
You’ll have a different understanding of your body.
Danielle Collins, an elite tennis player who had just ranked 33rd in the world in 2019, also opened up about her RA diagnosis in the same year. In a since-deleted instagram post she did share how her diagnosis has shifted her approach to holistic health and how she thinks about her body.
It’s okay to admit when you’re not ‘fine.’
Another elite tennis player (who won the Australian open and was ranked number 1) diagnosed just prior to Danielle Collins, Caroline Wazniacki shared how her fast-paced routine made it harder to admit when she was no longer “fine” — and it took some time (and more than one doctor’s visit) to finally get the answers she needed and come up with a plan.
Resilience and perseverance are skills you’ll pick up.
In an interview with Everyday Health Seth Ginsberg, the founder of CreakyJoints (a leading education, support and research org dedicated to arthritis and rheumatic disease), shared how perservance is something that’s utterly essential for navigating the sustained work of living with a chronic illness like RA.
You can find community to combat the loneliness.
Living with Sjorgren’s syndrome, lupus, fibromyalgia and rheumatoid arthritis while also being a beloved television personality and dancer, Carrie Ann Inaba is no stranger to the intersecting complexities of chronic illness. And she acknowledges that it isn’t all inspiring all the time — it can be deeply lonely. But that’s also why, as she wrote on her website back in February 2021, she supports people reaching out and sharing their experiences and connecting with one another to make things better along the way.
It’s not just in your head.
Paula Abdul, who has been diagnosed with both RA and Osteoarthritis told PEOPLE in 2020 that having her diagnosis helped her reckon with the fact that her pain wasn’t imaginary or less real and it most certainly wasn’t just in her head.
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