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Making the Invisible Visible

September 13, 2014

I told you I’d be back for Invisible Illness Awareness Week!

Most of my life, I’ve known pain. That’s not a blues line, or a metaphor. I’ve known actual, physical pain. Many people have. I know I’m not alone in that. But since I was a toddler, nearly two-years-old, I’ve been battling a potentially crippling disease: Rheumatoid Arthritis. Not everyone knows this, but kids get arthritis, too.

For a long time, I struggled with the visibility of my disease. As a kid, I’d see my peers’ scrunched up faces, asking, “Arthritis?!? Weird. My grandma has that.”

Shut up, Bieber. J'accuse!

Shut up, Bieber. J’accuse!

I had the, “why doesn’t she have to do the mile run? No fair!” Comments about my “orthopedic Keds” from a guy I had a crush on because I was wearing the tennis-shoe-version instead of the then-trendy canvas style.

Et tu, Taylor?

Et tu, Taylor?

My parents advocated for me in the classroom, with doctors, with friends or family who didn’t understand. As my disease went in and out of remission, with flares in my knees or my hands, I had to navigate spaces differently based on each day. Because we struggled to control my disease, one day I would be fine, the next I would be home or need extra help. I needed teachers to open my milk for me at lunch long past you were socially allowed to ask for that kind of help.  My fourth grade teacher once carried me back from a park because my knee was so inflamed, I couldn’t walk back with our class. I had a shop teacher who made other kids build my projects because he was determined to set my limits for me instead of letting me even give that wooden box a shot. He picked the most attractive 8th grade boy to do it, too, because my life has been, thus far, one epically-long romcom.

What happens when someone goes to shake my pain-afflicted hand in church or in a business setting. I’m thinking about trading this move in for an awkward hug.

Most of my childhood I felt somewhat helpless, and visible to the point of conspicuousness. So as my disease became more stable in my teenage years, I worked hard to make it invisible. There would be times when I couldn’t avoid the limitations, but as a young adult, I had a bag of tricks that would protect my cover. Still, I had to constantly make judgments based on social stigmas: should I go on that hike with my friends and risk being the person that has to sit on a rock halfway around while the others finish the journey? If I drive us around, is there someone with me who can pump my gas or will I be too ashamed to ask, so I should fill up first? Will my medication’s side effects embarrass me at a sleepover or, later, in a dorm? Because of the relative stability of the disease, I was able to recruit a few trusted sidekicks who could open ketchup packets. I had people to carry my books when I had a joint in my hand replaced my senior year. And none of those people teased me for wearing elastic-waisted pants for a month (Google “adaptive clothing” sometime and see what happens: lots of velcro and outfits that look like scrubs).

Sometimes the jokes make themselves, y'all.

Yeah it does. Sometimes the jokes make themselves, y’all.

Dating was rare, and difficult, and though I was more comfortable as I got older advocating for myself with doctors, professors, and other adults, being “out” about my limitations and pain was still not easy with peers. Too few people understood how rheumatoid arthritis worked. Comparing it to even more misunderstood autoimmune diseases like lupus or fibromyalgia (which my spell-check doesn’t even recognize as a WORD) was generally unhelpful. I developed standard answers for questions about my hands: “Are you double-jointed?” And snappy comebacks for people that yelled at me for parking in disabled parking spaces. I could talk about my RA on an as-needed basis, but I certainly never led with it in a conversation. I didn’t want the label. I didn’t want the presuppositions. And I could avoid all of that because, like a number of other illnesses, RA is relatively invisible.

For as long as I can remember, I’ve been a thundering advocate for other people. My mother taught me well how to stick up for, promote, and take up the cause of overlooked or marginalized people. I’m happy to be a champion for other gal. Marginalized people should know they matter. Disabled people shouldn’t worry about whether or not they’re “worth the trouble” that accessibility might cause able-bodied people. I’m a firm believer that human beings are always worth the effort.

It’s only in the last few years that I’ve begun to see how sticking up for myself should be part of my repertoire. If I can’t advocate for myself, and push for a world that makes room for me, then I’m a total hypocrite. I’ve never had trouble doing for my neighbor, but in almost a commutative version of the Golden rule, I must do for myself what I would do for my neighbor.

One of my personal heroes, disability rights activist Harriet McBryde Johnson, wrote a gorgeous story about her encounter with eugenicist Peter Singer. At one point in the debate, she describes the difference in their worldviews (emphasis mine):

To Singer, it’s pretty simple: disability makes a person ”worse off.” Are we ”worse off”? I don’t think so. Not in any meaningful sense. There are too many variables. For those of us with congenital conditions, disability shapes all we are. Those disabled later in life adapt. We take constraints that no one would choose and build rich and satisfying lives within them. We enjoy pleasures other people enjoy, and pleasures peculiarly our own. We have something the world needs.

Harriet McBryde Johnson (1957-2008)

Harriet McBryde Johnson (1957-2008)

After years in grassroots advocacy for women and children, I was invited by my rheumatologist to participate in Advocates for Arthritis. So, for two days of every September for the last four years, I’ve joined a band of doctors and their patients in lobbying their government on behalf of the American College of Rheumatology to pay attention to arthritis. A team of us from every state in attendance visit as many offices in our districts as we can: House and Senate offices. We lay out our public policy priorities and ask our representatives for a commitment. Some years, we even get one. We always get photo-ops.

This was a couple of years back, but it was practically a Christmas miracle that this many arthritic people could get up and get ready early enough for a 7:00 am photo shoot.

This was a couple of years back, but it was practically a Christmas miracle that this many arthritic people could get up and get ready early enough for a 7:00 am photo shoot.

My favorite part of the event (apart from the actual lobbying) is meeting other patients. This year, I met a woman with fibromyalgia who is unable to work because of her disease, and the number of doctor’s appointments she currently has in an effort to get her disease under control. She was just denied disability for the first time, after seeking help from a disability law firm she saw on TV that swindled her and held up her application process in order to collect a percentage of the back-payment in the event that she was awarded.

Another patient I met currently has her Lupus under control after losing two years of her life to the disease while she was working on her dissertation. She was turned down four times by her insurance company before they finally approved the drug that has put her into remission. Neither she nor the patient with fibromyalgia “looked sick” enough to get the accommodations they needed during their disease flares. This invisibility is what we go to the Hill to talk about each year. We bring bent fork lapel pins and impossibly bent toothbrushes to illustrate how hard it is for people who “look fine” to manage their daily tasks.

Eat it, arthritis.

Eat it, arthritis.

This year, we talked a lot about access. Access to drugs that, if they had been available to me as a kid, would have probably prevented the hip replacement I got three years ago (and the one I’m expecting to have in the next three years). These medications aren’t cheap, and because of a number of factors, including the bizarre hyper-patenting of biological materials, there aren’t what we would consider “generic” alternatives available yet. Several of the advocates I met cannot afford their medications, which cost anywhere from $2000-7000/month. Both the Arthritis Foundation and ACR have proposed legislation that would address these costs (and insurance company evasion of cost-sharing).

The other area of access we discussed was the availability of doctors to treat our diseases. Rheumatologists are specialists, but most of the work they do is what they call, “cognitive” evaluation. Rarely do rheumatologists perform procedures or order expensive lab tests, so when you’re checking out and you take your exam slip to the payment desk, there’s only one code circled: diagnostic/evaluation. They’re essentially billing the way that pediatricians, general practitioners, or neurologists do. But they spend much more time in the room with their patients than family physicians do. Every time I see my doctor, it’s at least a thirty minute visit. She’s asking about every joint in my body and examining them. She’s asking me about trends and we discuss pros and cons of my medicines. A lot of the time I feel like a walking science experiment: because I am. Give this drug three months and see if it helps. If not, we’ll try that one. All the while, my doctor is billing fewer patients and getting paid less money.

At a time when medical school and college loans are on the rise, doctors are coming out of school compelled to choose profitable careers, not necessarily scientific ones. Rheumatology is investigative, scientific practice. It’s observation and management, not cut and cure. As a result of these factors, the average age of those practicing rheumatology is mid-50’s. Many of the docs I know are preparing to retire. We have 50 million people in the U.S. with arthritis, and fewer than 5,000 rheumatologists. Pediatric rheumatology is already in crisis:

Pediatric_Rheuma_Map_2_2013-page-001

This doesn’t even give you a complete picture of the situation. Take, for example, my home state of Virginia, looking good in the 4 or more category. One of the rheumatologists I was lobbying with told us that number is really 4 full-time pediatric rheumatologists (all east of I-95) and one part-time pediatric rheumatologist just outside of DC. He said to get to the next pediatric rheumatologist from where he practices in Richmond, driving west, you’d have to go to Louisville, Kentucky. Several of the children he sees drive 4 or more hours to their appointments with him. That’s unconscionable. I’m honored I get to tell my representatives and their staff as much [respectfully] to their faces.

We also addressed significant cuts to the National Institutes of Health research funding, which has been creating losses across academic fields and in areas of study. Many of us spent our summer watching friends and family dump buckets of ice water on their heads to raise money for ALS research.

But if you really want to support medical research, get on the phone to your member of Congress and demand a stop to cutting the National Institutes of Health budget, experts say. That’s because private donations are a figurative drop in the bucket compared to U.S. government funding. NIH pays out $30 billion a year for medical research, compared to about $5 billion raised by philanthropy in 2007. –Maggie Fox, NBC news

Lobbying on these issues has given me an awareness that I’m truly not alone. There are patients and doctors who will saddle up with those of us living with chronic illness and pain. It’s a good reminder to see my team every year and to have colleagues who are ready to just hop into a cab if I can’t keep up. But these events have also empowered me with an opportunity to make myself and my disease conspicuous on my own terms, for the greater good of others like me. It’s made me more comfortable educating people about my situation and I don’t mind being the poster girl for arthritis anymore.

These orthopedic shoes turn out to be pretty useful for marching on Washington.

The docs and me. Totally aware I'm the Bosley in this situation.

The Capitol under repair, in its feature role as a metaphor for American government. With the docs and me. Totally aware I’m the Bosley in this situation.

Probably one of the best photo-ops of my life with Congresswoman Eleanor Holmes Norton. I'm a frikkin' gladiator.

Probably one of the best photo-ops of my life with Congresswoman Eleanor Holmes Norton. I’m a frikkin’ gladiator.

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5 Comments leave one →
  1. September 13, 2014 4:34 pm

    A wonderful blog post. This is Lisa from Invisible Illness Awareness Week. I have had aggressive RA for 21 years (since age 24) so I could relate to many things you mentioned–and yet I have such deep respect and compassion because you had to deal with the emotional questions and physical questions in ways no child should have to. wow. Powerful story, and as an advocate myself, I LOVE these stories of people like you who advocate for others as well. Wish we could have lunch! (I am in San Diego though…) 😦 Pleeeeease keep in touch!

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