Karen Ager, 48, is an author, wife, and teacher, and is currently completing her master’s degree in Wellness (mind, body and spirit health and wellbeing). Ager has been living with rheumatoid arthritis for three decades, since she was a teenager, spending her free time on the beaches of Melbourne, Australia, where she grew up.
“Basically my first signs of the illness came on without warning when I was 15 — I was literally just lying on the beach,” explains Ager. She had been lying down for a couple of hours and couldn’t get off her towel because of a sharp pain in her right hip, so sharp that she had to be carried home. Because she was a tall girl, her parents wrote off the episode as growing pains.
But the pains didn’t go away. At age 17, she went to see a rheumatologist. “He talked about joint immobility and pain and deformity and the buzzwords of ‘progressive’ and ‘degenerative’ and that sort of thing,” she recalls. “I got back in the car and turned on the radio and tried to ignore it. I slipped into denial right away.”
Ager took her medications as she was supposed to, but didn’t let herself think about the possibilities that her doctor had presented. However, her body couldn’t ignore the rheumatoid arthritis.
“As the year progressed, we found out that I have a very aggressive form of rheumatoid arthritis, and the medication really wasn’t controlling it,” she says. Ager’s rheumatoid arthritis symptoms were creeping into her daily life. She used to walk to the train station to get to work; now suddenly she was relying on her dad to drive her.
When Ager was 23, she and her mother traveled to England to a clinic that offered natural therapy to treat rheumatoid arthritis. She spent three months undergoing complementary treatments, only to get worse, finally ending up in a wheelchair. That, she says, was her lowest point.
“I had two years at home on disability, unable to work, completely dependent on Mom,” she says. “She had to feed me at times, and I couldn’t get up and down off the toilet myself or dress myself. It was really, really bad.”
Ager had to have an evaluation to determine whether she could continue getting disability payments from the government; a doctor had to review her case and make a recommendation based on her health.
“At that meeting, the doctor pronounced me unfit for work and put me on invalid pension,” she says. Being deemed an invalid in the eyes of the government hit her hard, and she became determined to fight. “I’m not letting this disease do that to me,” she remembers thinking. “That was the moment when my spiritual fight began.”
At the time, all of her friends were traveling overseas and involved in a lot of social activities, Ager explains. That in a way provided motivation. She decided to work on her mindset, get back on her medication and find a way to enjoy life. After a few months, she was “back on the mend,” she says, feeling healthy enough to get a part-time job teaching.
For treatment, Ager took what she describes as massive doses of prednisone to reduce the inflammation in her body, then started on methotrexate, but ended up with pneumonia as a side effect and will never again be able to take it. She then tried a number of different drugs — hydroxychloroquine (Plaquenil), infliximab (Remicade), and etanercept (Enbrel), just to name a few. For one reason or another, they either didn’t work or failed after a period of time.
About two and a half years ago, she started taking adalimumab (Humira), which she’s still on today, along with prednisone and celebrex. She’s doing relatively well, but still has days when her rheumatoid arthritis symptoms hit her hard and fast, such as when she recently flew from her home in New York to Miami. She climbed into her taxi to the airport feeling fine and was a little sore as she got to the airport. By the time the plane landed in Miami, she says, “the pilot called for a wheelchair for me — it came on that fast and furious.”
Ager says she tries to focus on the joys and pleasures that life can bring to help her get through the bad days and enjoy the good ones. She and her husband travel to their vacation home in Miami frequently, and they recently got a puppy, which they love walking together. “Exercise is really challenging for me and I do what I can,” she says. She loves to swim, and she rides a bike or does aerobic exercises when possible.
She also wrote a book about her journey with rheumatoid arthritis, Enemy Within, to help people with all different kinds of inner struggles and challenges, not just living with rheumatoid arthritis.
“I’m at a place now where I’m enriched by my struggles with this illness, and that I’ve become the person I am, not despite the illness, but because of it,” says Ager. “I think I’m a better person, a more caring individual, and more aware of other people’s needs.”
Her secret to living well with rheumatoid arthritis symptoms is embracing who she is and what she’s learned, chronic illness and all. “For me, the key was acceptance,” she says. “I had to get to a stage where I said, okay, I have this chronic disease — I can either be depressed about it and not have any quality of life and not push through the pain, or I can get up and, yes, expect the pain, but just get on with it.”
Rheumatoid arthritis has taught Ager to be appreciative of everyday moments because, with this disease, they can be quickly taken away. Whether it’s a walk down the street, a stroll through the park, or a breathtaking view of the ocean, she’s grateful for every moment.