Life with ankylosing spondylitis (AS) can be, well, burdensome to say the least. Learning how to adapt to your progressive disease can take some time and bring about a whole set of dilemmas. But by breaking up your AS management into workable chunks, you too can live a productive life.
Here are three management tips from others with AS on coming to terms and handling life with the disease.
Ankylosing spondylitis is just as hard to pronounce as it is to understand. Everyone experiences different symptoms and challenges, but knowing as much as you can about it can provide a sense of relief. Doing your own research and arming yourself with knowledge is liberating. It puts you in the driver seat of your own life and your condition, providing you with the tools you need to feel better and, more importantly, live better too.
"I wanted to have the ability to control AS and not let AS control me." – Tyler Hyder, former nurse, grandmother, and living with AS
Because there’s no known cause of the disease, it’s easy for those diagnosed with AS to blame themselves. This can trigger a wave of emotions, including feelings of sadness, depression, and overall moodiness.
Finding a support group of other patients who are experiencing similar challenges can be both empowering and inspiring. By talking with others, you’ll be able to confront your condition directly while also learn tips from others. Ask your healthcare provider about local groups, or contact a national organization such as the Spondylitis Association of America to find an online AS group. Social media is another way to connect with other patients.
"There is a moment, sometimes long after they tell you that you have an incurable, chronic degenerative disease, that you come to know that you are still you and that despite it all, you are going to be all right." – Michael Tracy Smith, playwright, poet, and living with AS
Nobody really enjoys going to the doctor. But when you have AS, it quickly becomes an essential part of your life.
Your rheumatologist specializes in arthritis and related conditions, so they truly understand AS and how to best treat and manage it. By seeing your rheumatologist regularly, they will have a better sense of your disease progression. They can also share with you new research and promising studies about treating AS, and suggest certain strengthening exercises to maintain or increase your mobility.
So no matter how tempting it may be to put off an upcoming appointment, know that sticking with it is the best thing you can do for your overall well-being.
"I have been referred to a promising rheumatologist and am currently undergoing treatment that will hopefully change my quality of life for the better!" – Amber Panagos, wife, mother, and living with AS