My Arthritis Led Me to Quit My Job: ‘The Pain Is Real’
Key takeaways:
Life has made Lovaine Cohen an expert on pain.
She has lived with ankylosing spondylitis (AS), a type of inflammatory arthritis, for decades.
Because of her condition, she quit her job in banking. Now, she helps others as a chronic pain coach.
Lovaine Cohen is all too familiar with pain. She knows the deep, relentless type of pain that changes lives and consumes thoughts.
It’s a pain that can be hard to diagnose, but one that eats away at cartilage and causes severe joint issues.
Lovaine has ankylosing spondylitis (AS), an inflammatory arthritis that affects the spine and joints. Many people experience back pain as the main symptom. It can also affect the hips, knees, ankles, shoulders, and other areas.
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“When you're in a lot of pain, all you're thinking about is the pain,” Lovaine says.
Lovaine has lived on both sides of the chasm. First, she was someone living chronic pain. Now, she’s a pain management coach helping other women.
An unpronounceable diagnosis
When Leah first received a diagnosis in 2001, she had never heard of AS. She could barely even pronounce it (ankle-oh-sing spon-dill-eye-tiss).
“In the moment, I was just actually relieved that [the doctor] put a name to something that I had been feeling for several years,” she says. “You know you’re not imagining it. The pain is real, but you don’t know what’s going on.”
Lovaine first began noticing a faint pain in her left hip in her early thirties. She was a young, active mom of two children in grade school at the time, balancing home life with her career in finance. Over time, the pain progressed from a slight, dull feeling into something more pronounced and constant. It started to affect her ability to walk.
A family friend working in the medical field recommended Lovaine see a specialist and referred her to a rheumatologist who ran a blood test.
The results came back positive for a gene called HLA-B27.
AS has a strong genetic component: Up to 85% of people with AS have HLA-B27. But some people have the condition without the genetic marker. Likewise, it’s possible to carry the gene without ever developing AS.
Lovaine’s combination of symptoms and the genetic marker made her path to a diagnosis relatively straightforward. Doctors took her pain seriously from the start.
But for many women, it can be challenging to receive a correct diagnosis. Women tend to wait much longer to get an AS diagnosis compared to men, according to the Spondylitis Association of America. That’s because AS has historically been considered a male disease. Experts used to say AS affected 9 times more men than women. But more recent estimates put the ratio closer to 3 to 1.
Lovaine had a diagnosis, but she didn’t have a cure.
A decade lost to AS
For a few years, Lovaine took medications to try to reduce the inflammation and combat the pain. But her symptoms persisted and worsened over time, until she could barely move.
At that point, her pain level was a “25” on a scale of 1 to 10, Lovaine says.
“It was excruciating,” she says.
She had to quit her job in the banking industry, unable to concentrate on the numbers and complicated tasks that had once been so familiar. The pain reduced her appetite, and she lost 30 pounds in a short period of time. Memories of playing with her son and daughter seemed like a lifetime ago.
More testing, including X-rays, revealed the cause of her extreme pain. The cartilage on her left hip had worn away, and her bones were rubbing directly against each other.
In 2008, Lovaine had a hip replacement and then started months of intense physiotherapy and rehabilitation. A year later, in 2009, she had a second hip replacement on the right side and the recovery process began again.
It took nearly a decade from when Lovaine’s symptoms first began until she was back walking relatively pain-free post-surgery. Nowadays, Lovaine says, she’s not about to plan a Mount Everest trek, but she’s regained most of her mobility.
“My whole thirties were a write-off,” she says.
But that multi-year journey prompted a career change and different view of life that otherwise may not have developed. Lovaine had left her corporate job before her surgeries. When she had recovered enough to work again, she decided to go in a different direction than banking.
“I felt that there was more for me to do being here. My destiny wasn’t to work in an office cubicle,” she says. “I really feel like those surgeries, and that pain, woke me up.”
Her experience with chronic pain gave her a new perspective, she says, driving home how short life can be. And her surgeries gave her a new lease on life to act on those insights.
“The fog was off my brain. I was no longer constantly in this pain space,” she explains. “I feel like I’ve given a second chance at life, so I don’t want to throw it away.”
From chronic pain to coaching
Lovaine wanted to do something meaningful to help others. After a year off work, she started working as a chronic pain health coach. Lovaine had always been an analytical, fact-driven kind of person and had thrown herself into researching AS and pain management over the years.
Now, she’s able to share what she’s learned and experienced with others.
AS is an autoimmune disorder, which means that it’s caused by the body’s immune system attacking healthy cells. Treatment, as Lovaine experienced, consists of medications to manage symptoms and surgery in more severe cases.
Like with other autoimmune disorders, diet and exercise can also help reduce inflammation and ease symptoms. Lovaine also focuses on mindset as an important part of pain management.
“A lot of it comes down to what’s going on up here,” she says, tapping her temple. “The mind is powerful.”
She didn’t have a coach or community during her experience with chronic pain, making it an isolating time. She had to find other sources of strength to get out of bed every day despite the pain, undergo multiple surgeries, and push through recovery.
“My main reason for doing all of it was because I had young children and a husband,” she says. “I had to be there for my family.”
Now, she’s focusing on offering support and hope to other people living with autoimmune conditions and inflammatory diseases.
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