RA Grrrl!

"I'm a girl you can't shut up!" - Kathleen Hanna

It's all about speaking what's unspoken, screaming what's unspoken....starts off the documentary, The Punk Singer (2013). I saw this film recently at a little cinema in Minneapolis and it was fantastic--I recommend it (especially if you're a "riot grrrl"). However, I'll say this disclaimer: if you're easily offended or squeamish about swearing or feminist issues such as rape, domestic abuse, sexism, sexuality--this might not be for you.  But I hope that won't scare you away because it's a really good documentary about singer/artist Kathleen Hanna and the riot grrrl movement. And, surprisingly, about her battle with an unexpected serious illness.

Just looking at me you would probably never take me for a raging feminist or "riot grrrl" or anything close to it. Librarian maybe. Soccer mom in sensible shoes? But looks can be deceiving, of course, and deep down (or maybe not so deep down) there is a fierce, passionate woman inside me wanting to scream what's unspoken, scream about the injustices I see against others. Some injustices that make me especially furious right now are those regarding health care:  access to treatment, patient care (respect, bedside manners, communication), affordability, medical debt, insurance and hospital greed, and especially the lack of understanding and awareness about arthritis and other "invisible" diseases.

During the last few years I've been starting to find my voice and speak out about these issues, which is great, but I feel like I need to do a lot more of it. There are still so many misconceptions about arthritis, especially rheumatoid arthritis. Most people just don't get it. They don't know or understand what a serious, debilitating disease it is. And that it doesn't just affect old people. It can strike teenagers, people in their 20s/30s/40s. Kids. BABIES. Babies and toddlers with arthritis? Absolutely.

Having arthritis means dealing with pain every day, with inflammation constantly eating away at your body. The medications are also serious--treatment isn't just popping a couple of aspirin or ibuprofen. We RA patients are getting I.V. infusions or injections of complex biologic medications that haven't been around that long. Or drugs also given to cancer patients, that compromise our already fragile immune systems. Steroids that destroy our bones. It's serious business, all of it. And most people don't have a clue.

Arthritis is the leading cause of disability in the United States, so why is there still such a lack of awareness about it? One of my friends who also has RA said it's because, "arthritis isn't a sexy disease." It's not cool to have RA, I guess. Or there's still too much stigma and fear connected with it. Maybe people just don't want to think about it because they associate it with the dreaded curse of getting old (and nobody wants to think about that). It's true, crippled old people hobbling around with arthritis isn't a very sexy image. But we need to change that image in people's minds and show the disease how it really is. It can affect anybody at any time.

But why are some other health causes more popular, like cancer? Is it because cancer is this tremendous thing to overcome, to beat, that makes it so appealing to support?  You can't really "beat" arthritis as there's no cure, and treating a chronic condition like arthritis doesn't work that way anyway. You can't zap it with drugs or radiation or surgery and it goes away. It also usually devastates people's lives on a longer term basis, and not as swiftly and mercilessly as cancer does. It can be an agonizingly slow, quiet killer.

Some people with arthritis are lucky and go into remission, but many others spend the rest of their lives trying to manage the disease and not become disabled from it. Cancer is an important cause, of course, as everyone's life is touched by it somehow (I've lost many loved ones to the disease). However, I'm willing to bet that everyone's life is also touched by arthritis in some way, but you just don't hear about it. The thing is, WE need a cure too! And we're not going to get one unless more people recognize that arthritis, and all of its hundreds of forms, is a serious health problem.

But back to the film. While watching it, I was getting all pumped up and inspired by Kathleen's dedication to her beliefs, her music and art, and to being a fearless empowered woman. YES! But then the documentary took a somber turn, about how she started getting sick all the time while on tour with her band Le Tigre and she was having these mysterious symptoms that doctors couldn't diagnose. Right away a gnawing thought popped into my head, Oh no, I bet it's an autoimmune disease.

Kathleen was diagnosed with late-stage Lyme disease in 2010 after suffering from it for five years. While not autoimmune, it's an infectious disease that can cause arthritis as one of its symptoms. And like arthritis, it can be very difficult to diagnose and treat.

Listening to Kathleen speak candidly about her disease in the film and watching her reveal intimate, personal moments on camera about her health really resonated with me. We don't have the same illness, but I understand a lot of the fears/anxieties/heartbreaks/frustrations she talks about living with Lyme disease. About how terrifying it can be suffering from something and not knowing what it is or what's going to happen. Each time something strange and unfamiliar pops up with my body I'm in a panic that I have a new incurable disease (Sjögren's? Lupus? Something else?). She also talks about how hard it is to deal with feeling like you have no control over your body. I know that feeling.

I love The Punk Singer and I'm going to watch it many more times, I'm sure. I admire and respect Kathleen as a feminist, pioneering the riot grrrl movement and I admire her dedication to women's rights and health care advocacy today. It also takes a certain kind of courage to admit that you have an illness and to share your story with others. I really appreciate that she decided to open up about it with so many people.

Watching this film makes me want to be like her, and be "a girl who doesn't shut up" about the things I believe in. I want to fight for the people out there who are getting screwed over by the health care industry, who can't afford their medications, who are disrespected and treated badly by their doctors, who are discriminated against by their employers, who are misunderstood and ignored, who are struggling against insurmountable medical debt, and who feel isolated and alone. People like me. And you.

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