“Sometimes I feel like a pro at chronic illness…But then there are moments when suddenly insurance starts dictating how I experience my chronic illness, and I feel like I’ve lost all power.”
Personal trainer Alex Levine adapted his fitness regimen to manage ankylosing spondylitis, and is now helping others with chronic illness to do the same.
"In June, you'll find me rocking rainbow rompers and glitter. Come July, look for me in my "Disabili-babes" shirt, with my cane covered in twinkly lights."
"There will be days where it feels like too much and that is okay. Just remember you can always wake up tomorrow and approach the world anew. And remember those days that feel like nothingness? They will pass, and you will feel again."
“In the art of juggling a chronically ill life, taking care of myself is the most important ball to keep in the air.”
“Disability can really bring out our creativity, and the holidays provide the opportunity to figure out new ways we can do some of our favorite things.”
“We are so much more than the time card punched, the dishes done, the to-do list checked off. We are friends, parents, children, siblings, lovers, partners...we are individuals, living in these bodies that need our care and grace.”
For patient advocate Sara King-Dowling, combining daily exercise with a monthly biologic injection helped keep her AS symptoms at bay.
Mental health mainstays like walking outside aren't an option if you're bed- or housebound — but these creative alternatives can help.
“Trying to give a number to my pain makes me feel like I’m minimizing the experience of what pain really means in my daily life.”
“While my parenting doesn’t look the same as it did when I was not disabled, I am still a good parent teaching my children valuable lessons — lessons that they may have not learned if I wasn’t sick,” says Angie Ebba, who lives with ankylosing spondylitis, fibromyalgia, and migraine.
"I have learned to survive by loving and listening to my body for exactly what and where it is,” says Sal Marx, of the many things they’ve learned about life after an AS diagnosis.
“Resisting the messages of the body is exhausting,” says Angie Ebba, a person living with ankylosing spondylitis, fibromyalgia, and migraine. “I found myself so tired and in so much pain that I simply had to stop, listen, and try to understand what my body was saying.”
Ever since I was diagnosed with ankylosing spondylitis almost a decade ago, I’ve wanted to make the disease a household name. The fact that President Biden is talking about how it has affected his son can only help.
‘I knew that if I had to face the day I couldn’t just wake up, hop out of bed, and move as quickly as the rest of New York City.’
‘In a strange way, I was relieved to be diagnosed. And on some other, deeper, quieter level, I felt a connection to my family in an ancestral way.’
Although Jed Finley was diagnosed with ankylosing spondylitis as a tween, he didn’t take it seriously until it starting stealing his ability to live his life fully, like making driving dangerous.
Roz’s father and one of her brothers had ankylosing spondylitis. But even as her pain persisted and spread throughout her body, doctors dismissed the idea that she could have it too.
Hannah Moskowitz’s pain, fever, and fatigue weren’t ‘textbook’ for an AS diagnosis. But she persevered until she and her doctors could figure out what was wrong.
Even with a very strong family history of AS, Reynolds still experienced significant delays in getting diagnosed.
Thousands of models will walk the runways during New York Fashion Week this fall and while they all work to make it look easy and glamorous, there’s one model who is working extra hard — struggling just to breathe, much...