Rheumatoid arthritis is a condition that debilitates but doesn't destroy – it hammers away with constant pain, but not so it's apparent to others.
That's why if you ask Kelly Young about rheumatoid arthritis (R.A.), she's quick to de-emphasize the "arthritis" part.
"Arthritis is one of the symptoms, but it's not the only symptom," she said. "It's a systemic disease."
Young founded the Rheumatoid Patient Foundation, the non-profit behind the first Rheumatoid Awareness Day, which took place on Saturday. The hope is to get people who are feeling R.A. symptoms to see a doctor now – and to get people with money to give some of it to R.A. research.
"The levels of research funding, federally, in the United States for this disease are much lower per patient than they are for comparable diseases," said Young.
What is it?
Young is one of an estimated 2 million people in the U.S. living with rheumatoid arthritis – most of them women. Simply put, R.A. is a lifelong autoimmune disease that causes joint inflammation. But the reality is much more complicated.
"I think it's important to understand that rheumatoid arthritis comes from the blood," said Dr. Daniel Arkfeld, a rheumatologist at the University of Southern California's Keck Medical Center. "And it's a trafficking of immune factors in the blood that go to the joints. The disease doesn't start in the joints; it's really in the blood."
Which means it's not just going to affect the joints: The infection can inflame the heart, the lungs, the eyes and other parts of the body.
"That's what can give you the flu-like [symptoms], the fatigue, the malaise that occurs with it, so it's very much a systemic inflammatory condition," said Arkfeld.
He noted there's been progress in treating R.A. with powerful biological agents – many of them with intense side effects – but that's been limited.
"There's no cure," he said. "The concept is that the biological agents work mostly downstream, and that we're trying to move upstream to get more to the source of rheumatoid arthritis."
The rheumatoid experience
It's difficult to understand how profoundly crippling R.A. is without talking to someone who has it. Arlene Grau was diagnosed nearly five years ago, meaning she learned she had the condition right around her 23rd birthday.
"I had no idea what it was," she said with a laugh. "I was like, OK – I know what arthritis is. Old people get that, you know?"
But the Lakewood resident would soon learn that R.A. was painfully different. "Excruciating" is the word she uses: joint pain, joint swelling, skin nodules – all of which played a role in sending her to the hospital at least 10 times last year alone.
"I can't remember ever being normal, or painless, or pain-free," said Grau.
On top of that, the mother of two says her R.A. is often met with indifference. One thing that especially bothers her is when people say she "looks fine."
"It doesn’t matter what I look like on the outside," said Grau. "Look at my lab work, look at me when I’m in the hospital. They’re not there 24 hours a day, seven days a week. They don’t go through what I go through, and they don’t feel what I feel. And like I said, I’m not going to sit there and cry and complain, because then nobody’s going to want to be around me."
A family connection
Grau and Young aren't alone. Norma Martinez is my mom – she's 47, and learned that she had rheumatoid arthritis two-and-a-half years ago. Unlike Grau, she’s not in constant pain, but she still has to deal with a disconnect in people’s understanding of rheumatoid arthritis, and how debilitating it is.
"I've had a couple of people that I feel have given up on me," she said. "They don't understand, and I really think that they're probably thinking, oh, Norma doesn't want to hang out anymore, she's making excuses."
Before her diagnosis, my mom couldn’t – and wouldn’t – sit still. Her job as a special education technician, which she’s been at for 26 years, had her chasing kids across the schoolyard (and the parking lot, a few times). That changed very suddenly when her R.A. symptoms began kicking in, she said.
"The swelling that I get in my hands is the least of my problems," said my mom. "I look at that and it's like, yeah right, whatever. It's just pain. It's just continuous pain, when the medication is not working … every step feels like your ankle is sprained, like you’re walking on a broken foot."
She wasn’t feeling good at the time of our conversation, since her latest medication – she’s tried seven of them so far – hadn’t kicked in. Like all R.A. patients, she can attest to the sheer difficulty of living with something that affects your every waking moment. She became emotional as she recalled coming home last month after one particularly rough day at work, thinking she’d have to quit her job and spend the rest of her life in a wheelchair.
"Your dad came home, and he saw that I was upset about something, and he came and he's trying to talk to me," she said. "And I just started crying, and I said is this what the rest of my life is going to be like? Am I supposed to live in constant pain for the rest of my life? Because I don't think it would be any fun."
But my mom stays upbeat – like Young and Grau, who fight R.A. and work to raise awareness about it. Dr. Arkfeld says he’s optimistic that one day, R.A. will be a curable – or at least, a better treated – condition.
Until then, my mom – and everyone with rheumatoid arthritis – takes it one day at a time.
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