Even after he was diagnosed, he continued to play with friends and on local sports teams, dreaming of playing at the professional level. Michael remembers, “From when I was four to 13, I was just the average kid—except my friends knew I could feel more sore than them after playing soccer. The only other thing that was different from any kid was that I took medications in the morning and at night.”
In the 25 years since his diagnosis, Michael is “focused on what I can do, not what I can’t do.” With a degree in television and broadcast journalism, that means starting a career as a sports broadcaster. And as a person living with rheumatoid arthritis (RA), that means sharing his story with the 300,000 kids and teens in the U.S. who are living with Juvenile Rheumatoid Arthritis (JRA) today.1
Michael hopes that telling his story will help those in the JRA community—and help the public better understand the condition, too. “Not a ton of people know that you can have arthritis as a child,” Michael says. “I really like explaining my story to people so that they’re not as apprehensive about approaching someone that looks different. They might think: ‘OK, maybe that person has rheumatoid arthritis.’”
Michael’s story
Rheumatoid arthritis is a chronic inflammatory condition that can affect more than the joints, and occurs when the immune system mistakenly attacks its own body tissues. While there’s no cure for RA or JRA, with an early diagnosis and aggressive treatment, remission is possible.2 In his lifetime, Michael has seen a change in the number of treatments and pain management options, saying “I feel very blessed to be able to have choices. And a lot of support.”
At 13, Michael began to experience very bad morning pain—a big tipping point in his life. He’d wake up in incredible pain and have to sit for a few hours waiting for his medication to kick in and for the morning stiffness to go away. Just like others with JRA, he experienced not just physical pain but the pain of losing several hours a day any time his JRA flared up. Eventually, he had to stop playing sports, calling that period, “probably my first and biggest mental obstacle ever in my life.” To keep participating in sports through junior high and high school, he became a team manager. But he was still losing hours every morning to his JRA-related pain.
As Michael became an adult and JRA evolved into RA, his conditions and symptoms continued to progress. As Michael’s rheumatologist Dr. Chabra would say, Michael’s body was like a house that had been on fire. The fire was out and the disease was no longer progressing, but the structural damage remained and couldn’t be repaired. The care team could only address the symptoms through a limited selection of treatments and surgeries. Michael had a hip replacement, then joint replacement surgeries for his knees, elbows and ankles. Finally, in his late 20s, Michael started a new treatment that helped him manage his morning pain and get his morning hours back. The treatment’s delayed release formulation helps ensure when Michael wakes up in the morning feeling “like a ‘regular’ person,” he says, “and that gives me peace of mind and a sense of normalcy.”
Finding what works for you
Michael knows that in addition to finding the treatment that works best, it’s also important to be prepared with the right pain management and to keep a positive outlook. Through his experience, he’s gathered a long list of practical pain management tips that work well for him and help him live a more active life.
Here’s what’s worked for him, in his own words.
Hot and cold packs: When sitting at a desk at work, these are really helpful.
TENS unit: TENS stands for transcutaneous electrical nerve stimulation. When I’m in a lot of pain but don’t want to miss out on plans, I’ll use my TENS unit. I just put the electrode pads on my skin and it sends out an electric pulse to disrupt the nerve signal my brain sends when it’s in pain. I don’t feel the pain in the same way.
Anti-inflammatory creams: These are great for mild aches and pains.
Compression: I have bandages and braces in every size imaginable. They hold everything in place, so I don’t experience bone on bone or feel like joints are slipping out of place. You can use them on any joint.
Acupuncture: If insurance covers it, then insurance has done the work for you. My insurance covers acupuncture, so I do acupuncture. It’s really great! And it’s also been shown to increase circulation.
Massage: Once a month or so I’ll do medical massage and have them put more emphasis on the area that’s hurting me.
Social media: I haven’t seen any juvenile groups, but everyone on the Rheumatoid Arthritis Facebook group is so helpful—they’re not trying to sell anything. Everyone just says, “This is what’s worked for me.” Of course, that doesn’t mean it’s going work for you, but if there’s no harm in trying it, then it can be a good way to learn what other options are out there.
Service dogs: My dog Noodle is from a nonprofit called Canine Companions, and helps me get that sense of independence back. I feel like “Okay, I’m responsible for my life. I don’t need to depend on someone and don’t feel like a burden.” I really can’t say enough about the organization.
Positive thinking/setting limits: My mom and I share the same motto to “Focus on what I can do, not what I can’t do.” I also find that its helpful for me to be honest and set limits for myself. I pay attention to my body and adjust as I need to. You learn that once you have the condition for a year or two you may not be able to do an activity for long.
If you or a loved one has an experience similar to Michael’s, contact your doctor. With early diagnosis and aggressive treatment, those with JRA can experience remission.2
References:
1. Arthritis Foundation. Accessed December 1, 2021. https://www.arthritis.org/juvenile-arthritis
2. Mayo Clinic. Accessed December 1, 2021. https://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/symptoms-causes/syc-20353648
