Managing multiple serious diseases, he finds support in community.
Lawrence “Rick” Phillips has known serious disease his entire adult life. On a family vacation to Disney World—supposedly the happiest place on Earth—17-year-old Rick started to exhibit signs of Type 1 diabetes. His mother, who also had the disease, had him take a urine test to check his glucose levels; a few days later, Rick was in the hospital, receiving insulin for the first time.
Now 59, Rick has far outlived the age when he thought diabetes would claim his life. Today, he also lives with rheumatoid arthritis/rheumatoid disease (RA/RD). It may be surprising to hear that in some ways, he appreciates the perspective it has provided.
“I’m not happy I have RA, but when I was diagnosed with diabetes at 17, I never expected to make it through my 40s, let alone live long enough to experience this. Over time, as I’ve been able to put RA in perspective, I realize the incredible sacrifices people in the diabetes community have made to enable me to live long enough to have RA.” His tenacious perspective makes Rick an inspiration in both the diabetes and RA/RD communities—he even blogs about it at RADiabetes.com.
The Beast, aka the Car That Led to a Diagnosis
In 1999, Rick was 42 and his son had just bought a beautiful Trans Am. Everyone wanted a ride, but when it was Rick’s turn he couldn’t get in the car. His body was so stiff and his pain was so great that he couldn’t maneuver into it. Rick’s wife, Sheryl, nicknamed the car The Beast.
Rick knew something was wrong with his health—he was in a lot of pain and having trouble walking around—but he kept busy, pushing forward. When it was time to take his son on a tour of Indiana University, Rick was excited to show off his alma mater and hopefully convince his son to attend school there.
But the trip was something of a disaster for Rick, who couldn’t make it through the campus walking tour. “It was my chance to show him something really special, but I just couldn’t make it—my body hurt so bad I was stopped in my tracks,” he says.
Back home, Rick had some bloodwork performed by his endocrinologist (the doctor who focuses on his diabetes treatment). He was referred to a rheumatologist, and Sheryl accompanied him to the appointment.
The new doctor got right to the point: “He was surprised I could even stand up, considering how bad off I was,” says Rick. “‘Be prepared to be in pain for the rest of your life’ is what he told me, and I was absolutely blown away—I had no idea I could have something like this. My wife and I went out and had a good cry in the car. Neither of us could ever have dreamed I would be affected by a disease like this.”
Staying One Step Ahead
That night, Rick started methotrexate, and has been striving to find solutions for his pain and other symptoms ever since.
Rick’s treatment regimen has changed many times in the years since he was diagnosed. To begin with, his rheumatologist suspected Rick would not respond to methotrexate, but had to put him on that drug for six months anyway because of an insurance industry practice called “step therapy.” In essence, Rick had to try this first methotrexate “step” and “fail” on the medication before insurance would cover a biologic.
Six months later, Rick finally got to try his first biologic, Remicade, which worked great—until it failed after about four and a half years. Since then, he has tried five other similar medications, including biologics and a Janus kinase (JAK) inhibitor. The challenge he faces is that each medication only lasts so long, and then stops working.
“When the medications work, I can do stuff like ride my bicycle and take walks,” explains Rick. “But when they fail, I can’t walk—I have to do things like use a motorized cart in the grocery store. It’s like a hammer hanging over a person’s life. I’m constantly wondering when the drug I’m on will fail.”
New drugs are continually being developed, and Rick has been able to stay one step ahead so far; each time he fails a medication, there is one new medication to try. But currently, he’s gone through the whole list of options; if he fails his current medication, there is nothing else available to him.
Compared with diabetes, Rick says RA/RD is a much more difficult disease to manage. “I live my life around medicine. Everything from my pill regimen to the biologic medications are scheduled, and it interferes with my schedule,” he says. “It’s a small price to pay for being able to be mobile, but I do hate it.”
Unlike some people, who spend many years searching for the answer to their symptoms, Rick knows he’s lucky to have received an RA/RD diagnosis so quickly—to not have faced roadblocks along the way. But he says he was his own roadblock, in a way: “I should have sought treatment much earlier. I was miserable, and you know men… we think we need to be tough. I was being tough and it nearly destroyed me.”
Without Work, What Defines Him?
Before he developed RA/RD, Rick had a thriving career, first as a city controller and then as the director of business at Westfield Washington Schools in Westfield, Ind. He controlled a $25 million budget that served a student population of nearly 6,000, and managed staff, school buses, food service, construction, cleaning and maintenance—an enormous responsibility.
“I loved being right in the middle of it, making big decisions,” he says. “I wanted to be a city controller since I was a kid, and I became one at 36—I’m proud of that. I loved being able to figure out ways to serve people, and when people asked me who I was, I would tell them what I did for work.”
Rick says when he had to stop working in 2008, he felt lost. “I was absolutely frightened. I was my job, and when I had to give it up, I was despondent. I still am. I wish I were working; when I had to admit I could no longer work, I simply melted down.”
Now when he meets people, he struggles to answer the question “What do you do?” and usually says he’s a “professional ne’er-do-well.”
Community-Building Through Blogging
Rick can add “blogger” and “advocate” to his list, too. He started RADiabetes.com in 2015 to tell his story and to build community. He has also blogged for CreakyJoints, does some speaking engagements in the diabetes community, participates in bicycling fundraisers, collaborates with the Arthritis Foundation, connects with legislators on issues that impact people with diabetes and arthritis, and more.
He’s modest about his efforts: “It always amazes me when someone says they read what I wrote… and says it is good or important to them in some way,” says Rick.
Sometimes, Rick uses his blog to tackle misconceptions around RA/RD. He has encountered many people who have osteoarthritis but say they have RA/RD on their bad days: “It’s a way to amp up the story,” he says.
He doesn’t believe those people are trying to get extra sympathy. Instead, he explains, in our culture the pain of osteoarthritis isn’t taken as seriously as the pain of RA/RD, and those people just want their pain taken seriously.
Other people want to compare their pain and decide who is worse off. “But we all get to the same place, just in different ways,” he says. “My joints hurt a lot; a person with osteoarthritis has joints that hurt a lot.”
Rick urges anyone with unexplained pain to get it checked out as soon as possible, because people with osteoarthritis may be able to get some longer-term relief. Those who end up with a RA/RD diagnosis are better served the earlier they get diagnosed. And no matter what the diagnosis is, we all are served when we respect each other’s pain experience.
“There is no good pain. There is no worse pain,” says Rick. “I have to honor yours, and you have to honor mine. I can say ‘I feel better today than yesterday,’ but I can’t compare my pain to yours and say one is better or worse. We don’t need to compare. We’re in this together.”