When Helen King couldn’t lift her left arm in 2014, the first thing she did was go to see her spine doctor. Six years earlier, King had suffered what felt like a stiff neck that wouldn’t go away. Eventually, she began to lose the feeling in her fingers. Her spine doctor recommended that she undergo a cervical discectomy and fusion. Four spinal discs were removed from her body as the doctor inserted a cadaver bone and a titanium plate into her neck. So on that day in 2014, when her index finger was stiff and she couldn’t raise her left arm, the 49-year-old thought the symptoms were related to her spinal surgery. “When my doctor examined me,” King says, “he told me, ‘This has nothing to do with your neck. I think you have rheumatoid arthritis (RA).’ It was completely out of the blue for me.”

Stiffness and Numbness Symptoms Suggest Rheumatoid Arthritis

As the disciplined daughter of an Army officer, King relentlessly pursued the appointment with a rheumatologist. After three months of pleading, haranguing, and cajoling, she was finally able to get a face-to-face visit with the doctor. The rheumatologist made an RA diagnosis. “And that’s when I began to cry,” King says. “During those few months, I had done the absolute wrong thing, Googling and trying to figure out what was wrong. Nobody in my family had RA, so it was all new to me. As soon as I read it could lower your life expectancy, it really hit home. So when I went to see the rheumatologist, I went in with this idea that I’m going to end up in a wheelchair. Hearing the diagnosis from him just seemed to be the nail in the coffin. But that’s when the doctor said, ‘Helen, I can treat this! If you told me you had osteoarthritis, all I could offer you is surgery.’ That stopped me in my tracks. For the first time, I felt like, ‘Okay, I can do this.’”

Starting Aggressive Treatment for Rheumatoid Arthritis Right Away

King’s rheumatologist recommended an early, aggressive treatment. “He told me, ‘Hit it hard! Don’t wait!’ and put me on methotrexate right away,” King says. But taking the medication in pill form made King feel nauseous. Rather than give up on the drug, her doctor suggested she try a liquid oral form that did not have the same preservatives, which may have been triggering her nausea. The new form of the drug was much better for her stomach. A few months later, the doctor added a biologic to her treatment plan, and King has been managing her RA symptoms well ever since.

Learning How to Balance Work and Her New Life With Rheumatoid Arthritis

“I was always a go-getter,” King says. “I work for the CEO of a financial services company. It’s very stressful, very demanding clients. I’ve always been the kind of person who could say, ‘I don’t need help. I can do it.’ But at the beginning of a diagnosis, there is so much going on. You’re taking in all of this information. Your body is changing. You’re not the same. For me, the struggle was learning how to balance it all. If I work a 50- or 60-hour week, is it okay to stay in my pajamas all day on Saturday and not feel guilty? That’s when I started to try to find other people that had rheumatoid arthritis. I want to understand what other people are going through.

Seeking Support and Understanding From Peers With Rheumatoid Arthritis

“Family and friends are fantastic, but they can’t understand the way someone who has walked the same road can. When I say I’m exhausted, it’s not about sleeping. It means that I feel like I got run over by a truck. I wanted to connect with other people who experienced that. And what I quickly learned was that there was nothing in person. There was all this stuff on social media, and for me it was way too negative. For me, it slowed me down; it didn’t lift me up.”

The Value of Support Groups for People With Rheumatoid Arthritis

King eventually found Arthritis Introspective, a support group that has subsequently merged into the Arthritis Foundation. King was trained to become a connection facilitator, which is a person in a geographical area who helps arrange meeting groups for others looking for support in dealing with their arthritis. A facilitator finds space for the group to meet, and helps people find resources such as doctors, nutritionists, Pilates instructors — any resource that can help a person suffering from arthritis to manage their symptoms and live their lives fully. “I wanted to bring to my community what I was searching for and couldn’t find,” King says. “So I decided I would start it. My first step with the Arthritis Foundation was to help empower myself and take control of my situation.”

A Brand New World of Socially Distanced Support Group Meetings

Since COVID-19 has made the world a more virtual place over the last year, King has found herself become more of a national facilitator for her local group. “Now that more events have gone online,” she says, “if there is a renowned rheumatologist speaking in a different city, I can help plug my members in to hear them speak. It’s revolutionized how we think about events and programming for our members.”

King also speaks highly of the Live Yes! INSIGHTS program, which allows people to anonymously take a 10-minute assessment of their issues with arthritis. “They are able to crunch this data and sort it by ZIP code. So now, we have a much better idea of what the concerns of our membership are, whether it is pain management, healthcare, treatments, you name it.”

Recognition for Raising Money for Arthritis Awareness

In 2017, King formed a team to join the foundation’s Walk to Cure Arthritis in Philadelphia to raise money and bring awareness to RA and the hundreds of types of joint diseases known as arthritis. “I was ready to talk about what was happening, and in the beginning I think a lot of people weren’t ready to talk themselves. They were worried about how people would look at them, and being accepted in the community.”

Last year’s walk was made into a virtual event, and this year’s event, on June 5, 2021, will be as well. The risk of having so many immunocompromised people together was far too great. As the chair of the event in the Eastern Pennsylvania and Southern New Jersey area, King will continue to fundraise to ad to the nearly $300,000 she has already raised for arthritis research

Perks and Rewards of Organizing Arthritis Support and Support Groups

“The best parts of being a facilitator are the emails and thank you cards that people have written,” King says. “There is one woman in particular, she came to the support group with her husband, and she had all but given up. It’s a story you hear a lot. When she got there, she was crying. The next day, she wrote me an email, thanking me and the group, and saying how she was going to find a new doctor and new treatment. Because of the group, she was willing to put one foot in front of the other. You can only do it one day at a time,” King explains.

How Helping Other People Helps the Volunteer

The most rewarding thing about running the group — you actually feel like you are helping people, according to King. “And they are helping me. We’re all going down this path together. Our paths all might look different. But when I focus on other people, it takes the focus off of my own journey.”

King encourages people with arthritis to volunteer with the Arthritis Foundation if they feel comfortable. She has found the growing amount of work she has done for the foundation as empowering. “People can give an hour a day, an hour a week, even an hour a month,” she says.

King volunteers many more hours than that in her role as a Platinum Ambassador for the Arthritis Foundation, an elite group of volunteers that serve as liaisons between the Arthritis Foundation and representatives in Congress in an attempt to raise awareness of the disease with legislators who can make a difference in legal and financial support. “We’re mostly a volunteer organization,” King says. “So you can even do things like call on your legislators to raise awareness for people with arthritis. You can do it from your own home with an email and a click of a button.”

To King, working the arthritis community has been a life-changing experience. “Especially with COVID, we are so much more connected online,” she says. “I have friends around the world, and we are all trying to help one another. Everybody has these great ideas. I’m not the expert on any of this. I feel like I learn just as much from them as they do from me. You can either allow RA to consume you, or you can live your best life possible. I remember telling my mom when I got the disease that I can’t wait until RA is something I have, rather than who I am. I feel like I’ve taken my life back. It’s part of who I am, but it isn’t entirely who I am.”

Making Lemonade With a Midlife Rheumatoid Arthritis Diagnosis: One Woman's Second Act