Project Wonderful

Sunday, March 9, 2014

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,


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  1. How awesome that you were able to look past the negatives and embrace everything you learned from your experience. I just started blogging about my life with autoimmune disease. Maybe you can relate:

  2. Thanks so much for writing this. I really appreciate you sharing such a personal story. It also made me feel more empowered dealing with my own chronic illness.