How Having a Rare Disease Made Me Good At My Job

As many of you know, I have Takayasu's Arteritis, which is a form of vasculitis and a rare, chronic auto-immune disorder. February 28th was Rare Disease Awareness Day and many people shared and encouraged other to share their stories about living with vasculitis online.

Before I go any further, I want to emphasize that I am fine. I've been in remission for years and was lucky that I had parents and doctors and healthcare (hello, HEALTHCARE) such that I was diagnosed early and avoided some of the more serious complications associated with the disease. That said, being sick sucks any way you slice it. Now that I've been in remission for a long time, I can look back on my experiences being actively sick and see how they shaped who I am today. I've been meaning to write a post like this for a while and since Rare Disease Awareness Day occurred while I was traveling for work, I had the kick in the pants/layover down time to make it happen. (Sorry person sitting next to me who saw me cry in the Minneapolis airport.) So without further ado, here is how being sick eventually made me good at my job:

1) It taught me empathy.

I posted about Harold Ramis dying from vasculitis on Facebook the other day and a friend jokingly responded, "but you don't look sick." This is a common response to people with a rare disease and one of the most surprising things about being sick. On the one hand, your life is entirely about your disease. Things like what you eat, how much sleep you need, managing pain, and the stress of dealing with doctors and insurance companies are always on your mind and often the lens through which you see your day. At the same time, when I was most actively sick it was from my Freshman to Junior years of college. I was making new friends, picking majors, doing internships and studying abroad in St.Petersburg, Russia. Most people I interacted with besides my close friends and family had no idea I was sick. When I routinely arrived unprepared to meetings with my academic advisor, I must have seemed irresponsible. When I slept 12 hours a day, I must have seemed depressed and anti-social to my Freshman year hallmates. When I was constantly sweaty, often out of breath and bright red walking around campus, frequently screaming on the phone to my parents or insurance company, I must have seemed...gross? crazy?

I tell you this not to play the world's tiniest violin, but to paint the picture that has informed my interaction with volunteers, party activists and other less than savory, more difficult characters. It's also what makes me so supportive of Democratic causes like access to education, providing universal healthcare, and rehabilitation in our prison system. I am as big a proponent of personal responsibility as you're likely to meet, but it seems to me that people who don't support these causes have never been the victim of circumstances beyond on their own control.

We've all seen the Ian Maclaren quote on Facebook, "Be kind, for everyone you meet is fighting a hard battle." Being sick has taught me to temper my natural inclination toward judgement with the understanding that you never know what's going on with someone else's lived experience.

2) It made me better at dealing with candidates.

I remember once while waiting for MRI results that from a specialist who was slow in responding, I sent an exasperated email that included the line, "please remember, while this is your JOB, this is my LIFE." Sure, it was a tad dramatic, but I often reflect on those interactions when dealing with finicky candidates. It can be very frustrating when your candidate doesn't seem to trust you or your judgment, but at least from a candidate's perspective at the end of the day, it's their job and reputation on the line, not yours. Of course, good campaign staffers are deeply emotionally invested in their races, but that's sometimes hard for a candidate to see. It doesn't make them right, but it does help me to remember what it feels like to have a stake in something that is deeply personal to me, and primarily professional to somebody else.

3) It taught me to push myself.

I've said before that the greatest lesson to learn from working on campaigns is that you are capable of more than you know. As I mentioned above, despite being pretty actively sick I (probably unwisely) studied abroad, started college, interned at the Massachusetts State House, and for a while swam a mile every day. Although in retrospect this probably wasn't the wisest decision for my physical or mental health, it did give me strength, self-confidence, and a deep rooted belief that I can accomplish anything. This served me well when I started campaign life. Fourteen-hour work days? I can sleep after the election. Eight hour call time? No problem. GOTV goals? Sure, I like a challenge.

The flip side to number 1, of course, is that knowing what one can do in the face of adversity, as a manager I don't take kindly to people who make excuses and I don't make them for myself.

4) It made me crave something outside myself.

The sad reality of being sick is that it forces you to become somewhat narcissistic. I was lucky to be at the center of a network of friends, family, and health care professionals all taking care of me. So many of my conversations were about my body and how I was feeling. So much of my mental bandwidth was taken up by my physical being. There wasn't an hour of my day where some part of my brain wasn't thinking about doses of medicine, test results, side effects, or endless arguments with insurance companies. By the time I graduated college, I was ready for my brain to be obsessed with anything but my body.

Campaign people joke that the best way to get over personal trauma is to hop on a campaign because you simply won't have time to be in your own head. Never has this been more true than when I graduated college. Although I had been in remission for over a year, it wasn't until I began my first job on a campaign that my life became about something other than my illness. After years of feeling like a victim of circumstance I was suddenly eating, sleeping and breathing agency--not only empowering myself, but empowering other people. I was able to redirect the single-minded focus that had allowed me to graduate college, join a sorority and live a relatively normal life despite being sick to something bigger than myself. (Sometimes to my doctor's and parents' chagrin) I didn't have time to think about my body all the time anymore. I wasn't a sick person, I was an organizer.

5) It taught me crisis management.

Long-time readers may remember a post last year in which I shared that I've suffered from fairly intense anxiety and panic attacks--a phenomenon I attribute almost entirely to having been sick. When I was diagnosed, I was about to graduate from high school. I had been admitted to Tufts University, which to my 17 year old mind was as close to a utopia as a smart, passionate, sensitive girl from Chappaqua could get. I had worked really hard to get into Tufts and was eager to start my new life among like-minded people far from the hometown where I never felt accepted. And then, just like that, I had the rug pulled out from under me. Being diagnosed with a chronic illness, especially one no one I knew had ever heard of, threw a wrench in my plans to say the least. Visions of college a cappella and studying on the quad were replaced by fears of hair loss and weight gain (which, by the way, are drug side effects I was way more afraid of than having a stroke or heart attack, thanks for that, society.) Since then I have been wrestling with the underlying awareness that no matter how well things are going, everything can change on the drop of the dime. Little things like my boyfriend not texting me back right away or my boss emailing me "let's find a time to talk later" have been known to send me into a tailspin of worst case scenarios.

That said, when the rubber hits the road, I am excellent in a crisis. Due to the curve balls that being sick has thrown me, I learned to make bold, firm decisions quickly and see their next steps and consequences, even under pressure. I can fire staff, hire new staff and issue a press release while other people are still freaking out about the offending tweet. I know there's no point in fixating on what cannot be changed when there are circumstances that still can be. And even when things are bad, I can put them in perspective.


So that's that. I always feel a little awkward when I post something intensely personal, so I hope you found value in it. Hoping you never have to experience this stuff first hand.

Campaign Love and Mine,


Nancy

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Oh and If You Only VOMIT at One Political Ad...

Hat tip to Buzzfeed for sharing this angry-making, disgusting, fear-mongering piece of political nausea. The irony? Last time I checked it was the Republicans trying to get all up in my lady bits telling me what I can and can't do with my body. Well, a little truth never stopped the people trying to deprive us of healthcare before. Gross.

My Favorite Mistake- Why I am Way More Excited to Vote for Barack Obama in 2012 than I Was in 2008

I want to share you guys on a little secret: I actively disliked Barack Obama when he ran for President in 2008. As a Democratic operative for a Senate candidate in a swing state, I even turned out voters for him, but I didn't like the guy. Don't get me wrong, I still voted for him. I'm not a self/poor/gay-hating feminist. But unlike the vast majority of my contemporaries, I was the proverbial voter holding her nose in the voting booth.

I'll be the first to admit, some of my reasons for disliking now President Obama were petty. I had spent 11 months in Iowa working for his opponent (John Edwards) in the caucuses. To work those kind of hours in that kind of climate (particularly for that kind of candidate) you have to believe that anyone else securing the nomination is tantamount to armageddon. In part because of the attitude and inexperience of certain staff members with whom I interacted, and in part because of my lingering sadness and confusion over John Edwards losing the primary and the subsequent scandal, I found his campaign condescending and difficult to work with.

Even after Obama's inauguration, I remained skeptical of his liberal credentials and his penchant for compromise. I was worried that he was more smoke than substance. I’ve always been more of an LBJ than JFK kinda girl.

But there was another reason I was wary of Obama’s 2008 campaign, and the candidate himself: Hope. The fervor and enthusiasm that accompanied Obama’s 2008 campaign is the stuff of legends. Hordes of activists my age and younger knocked doors, made phone calls and attended rock concert-esque rallies with the belief that this man could single-handedly change the way we do business. As a career Democratic operative, I worried that Obama could not live up to this promise and that the result would be a generation of disappointed and disenfranchised voters.

Despite having missed out on the fun (and career opportunities) of supporting the President in 2008, I view my former skepticism as a tremendous gift. I can look with clear eyes (and full heart) over the past four years and say this President has met and exceeded my wildest expectations.

I could talk about 800,000 jobs created and 32 consecutive months of private sector job growth, and all of that would be true. But I don’t really work in the private sector, and by dint of what I do, any Democratic nominee would contribute to my job opportunities. Let’s talk about what matters to me, as a voter.

1) Health Care. Devotees will remember that I’ve had a rare life threatening illness since I was 17. Had I not been on my parents’ insurance when I started feeling symptoms, I very easily could have died. Without quick diagnosis and access to specialists, I could have lost my vision, had a stroke or needed to have a limb amputated by the time they figured out what was wrong with me. I know this because there are people in my Takayasu’s Arteritis facebook group who were diagnosed too late because they couldn’t afford to go to the doctor or their HMOs didn’t provide them access to tests and doctors familiar with my disease, knowledge that is never far from my mind. Needless to say, this is an intensely personal issue for me. My President has successfully passed the first meaningful health care legislation in my lifetime, ensuring that no little Nancy is afraid to go to the doctor because her family won’t be able to afford ensuing health care costs.

2) Equal Rights. My first internship in politics was at Gay Men’s Health Crisis, an AIDS advocacy organization in New York City. It was the summer after John Kerry lost the 2004 election and spirits were extremely low. Every day I would go up to the lunch line (we served free lunch to clients who could not afford both food and the rising costs of medication) and try to get our clients to call the Speaker of the New York State Senate asking him to block a bill that cut funding for Medicare, a program on which many of our clients relied. Every day my requests were met with the same responses. “I'm sick and I'm gay. The government doesn't care about me.” or “It won't make a difference. There's nothing I can do.” It was there that I first fell in love with organizing. When I finally convinced a client to make a phone call, a light went off in my mind. He would not have made that call without me. I wasn't just giving him the opportunity to speak out on one issue, I was showing him that there was someone listening on the other end of the phone. I thought about my clients when Barack Obama made history by coming out in support of equal marriage. I thought, “See? Your President sees you, he cares about you.” I wept. It wasn’t just because some of the most important people in my world are gay and I want them to be able to get married (although they are and I do.) This could be any group. Gay marriage is a civil rights issue and my President is on the right side of it. I feel safer and prouder to be an American knowing I have a President who takes the concepts of equality, liberty and the pursuit of happiness seriously.

3) Meritocracy. There’s this myth that liberals want to move toward a socialist society where everyone’s the same and makes the same amount of money. Nothing could be further from the truth. I am a huge advocate for personal responsibility and frankly,a snob. I firmly believe that there are people who are smarter, more talented and more driven than most of society and they deserve to have more, better stuff. What I don’t believe is that all of these people are magically rich, white, cis-gendered men. Meritocracy means equality of opportunity, not equality of result. My President passed the Lilly Ledbetter Fair Pay Act, doubled funding for pell grants and established a college tax credit to ensure that the true cream rises to the top and our country can continue to lead and innovate.

4) 9/11. I didn’t realize how much September 11th had affected to me until I spent a September across the country from New York. While seeing a plane crash into the twin towers was shocking and terrifying to anyone watching, New Yorkers experienced the immediate fear that we knew someone who was down there. I was a Senior at High School at the time and I remember comforting a girl I had never met before who was sobbing hysterically because her father worked downtown and cell phone towers were down so she couldn’t get in touch with him. Where were our parents and grandparents? My father, who grew up in the city, couldn’t bear to hear it discussed in public for weeks afterwards. While I found it crass to celebrate Osama Bin Laden’s assassination, especially with the knowledge that it could never bring people back who had died, his death settled something in me that I hadn’t even know was unsettled. It reaffirmed American supremacy in a way I found deeply comforting. My President shot the boogy man and signed the First Responders bill.

5) The war in Iraq. Have we all forgotten that this President ended the war in Iraq? A war that should never have been started in the first place? A war that was an international embarrassment? My President followed through on his commitment to end the war, saving countless lives to say nothing of money that could be spent on education and health care.

As you can imagine, its very difficult for me to relate to someone who is not excited about voting, and this year in particular. If you are one of those people who was fired up about the President in 2008 and isn't feeling it this year, I urge you to show up at a campaign office and see if you don't get inspired. I could scare you by asking you to consider what a President Romney would mean for women, gay people, and the working class, but the truth is I shouldn't have to. Our President has done so much in these past 4 years to move our country forward that his record stands on it's own even without comparison.

If after all that you still resent our President for not living up to whatever ill defined expectations you may have set for him 4 years ago, I'll make you a deal: I voted for him when you were guzzling kool aid, even though I was dragging my heels to the voting booth and the sounds of the man's voice made me viscerally nauseous- so please return the favor. I'm confident that gamble will work out just as satisfyingly for you as it has for me.

Fired Up and Ready to Go,

Nancy