How to live with the pain of AS (Ankylosing Spondylitis)

It is difficult to put into words the feeling of being diagnosed with a painful, life-threatening condition like Ankylosing Spondylitis (AS) at the best time of life, when you are young and full of dreams, hopes, and plans. On one hand, you are trying to start your life over, and on the other hand, you have to face such a challenge. This is truly a heavy burden. However, there are those among us who have found ways to live successfully with this condition and come to terms with their new lives. Today, we are talking about two such people.

'I was very scared' – Ivan's story

Ivan has suffered from walking difficulties since childhood. Sometimes he had to use crutches and take painkillers to get through the day. He also started meditating at a young age to cope with this pain.

At the age of 21, while studying for a nursing exam, Ivan realized that the symptoms he had been experiencing for a long time were very similar to a condition described in a textbook for the exam. With that suspicion, he went to see a rheumatologist, a doctor who specializes in joints and spine problems. After tests, he was diagnosed with Ankylosing Spondylitis (AS).

The biggest fear that came to his mind with this news was about his chosen profession.

"When I got a job as a nurse working in the Emergency Treatment Unit (ETU), I was really scared," says Ivan. "I was afraid that if I had a flare-up, I wouldn't be able to work. I realized that if I wanted to stop the nightmare of becoming disabled in my 20s from coming true, I had to take care of my health in every way possible."

So, he started seeing a pain psychologist who taught him ways to manage pain without medication. He also tried a therapy called Acceptance and Commitment Therapy (ACT) . Simply put, this therapy helps us stop fighting our thoughts and feelings and instead accept them.

"I only attended a few of those therapy sessions. But it helped me overcome more than a decade of mental pain and depression," Ivan says. "I chose to accept this situation. I am grateful for the opportunity to overcome this challenge and live a happy life."

Viktor Frankl's book 'Man's Search for Meaning' has also been a great inspiration for him to develop this mindset. The book talks about his time as a prisoner in a Nazi concentration camp. It describes how he lived with dignity during that difficult time and found meaning in life.

Ivan has been in remission for 14 months now. A healthy diet, prescribed medications, and exercise (he does yoga, lifts weights, and does at least 75 minutes of cardio per week) have all contributed to his recovery.

"I am very happy to have the opportunity to work effectively and feel successful as a nurse. Also, I am grateful for AS, in a way. Because it has forced me to prioritize my mental and physical health at such a young age."

"I still have pain and stiffness, but I'm very happy to be living my life today, free from the severe illnesses that plagued me for 10 years," he says. He's also preparing to fulfill one of his biggest dreams: taking a year or two off from nursing and cycling across continents.

'I thought it was all my fault' – Tristan's story

In 2013, Tristan was a bright student pursuing a degree in chemistry. But in the spring of that year, he began to feel inexplicably exhausted. He couldn't get up in the morning, and he began to miss schoolwork.

"I thought I was undisciplined. I thought it was all my fault," he says.

It was only later that Tristan learned that he had a condition called non-radiographic axial spondyloarthritis (nr-AxSpA), a form of AS. Simply put, both AS and nr-AxSpA are inflammation of the spine. In nr-AxSpA, the damage to the spine is not obvious on X-rays because of the early stages of the disease. As the disease progresses, the vertebrae in the spine can fuse together. Sometimes, this can affect other organs, such as the eyes.

"The problem is, when the inflammation inside my body increases, it feels like my brain function decreases. It's like 'brain fog,'" he explains.

"When I was studying chemistry, I couldn't do lab work. It required standing for long periods of time and handling glassware carefully, but I found it difficult."

In the end, he had to make a very difficult decision - to drop out of school.

"I was someone who had a very passionate and dreamt of working in the field of chemistry. Losing all that was very hard to bear," he says.

But Tristan didn't stop there. He decided to open another door. Although he was never an athlete, exercise became a major part of his life. He started doing hip and back stretches and lifting moderate weights. But the real star of his workout regimen was a device called a vibration plate . This device causes muscles to contract and relax several times per second. It is said to increase strength, flexibility, and reduce pain. Tristan uses it for 10 minutes every morning.

"Those vibrations really loosen up the stiffness in my body. Sometimes I struggle terribly with my joints, but after doing this, I feel an immediate relief."

After he recovered a bit, it was time to find a job that fit his new life. Tristan taught himself computer programming. Today, he works as a computer programmer.

Tristan now works under a boss who understands his condition and the challenges it brings.

"I still have a hard time working from 9am to 5pm like everyone else. The morning rush is the hardest. But I'm lucky, because my boss understands and helps me."

"It's hard to deal with not having the life you want," he says. "I used to be an overachiever, a 'type-A' personality. I've had to accept that I'm not as fast as I used to be, and that I don't have to do extreme things to be happy."

"I can now go home and enjoy a quiet evening, and enjoy a short walk in the park. It was very difficult to get to this point, but the way I look at life has completely changed."

Both of these stories show us how challenging it is to live with a chronic disease like AS. However, they also show us that with the right medical advice, psychological support, lifestyle changes, and a strong attitude, this challenge can be overcome. If you are suffering from a similar condition, don't feel alone. Talk to your doctor and get the support you need.

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