Elizabeth Ann has trouble adjusting to a career at a non-profit, until something clicks about what it means to advocate for rare disease.

Elizabeth Ann holds bachelor's and master's degrees in communication studies and currently serves as the communications director for a non-profit organization dedicated to supporting research on a rare neurodegenerative disorder. 

Transcript

I used to work in tech for a cutthroat, sometimes toxic, company made primarily up of men who spoke only in industry jargon and profanities. Despite these flaws, we were a very close community bonded by the trauma of trying to move product as the tech industry fluctuated during the pandemic, first booming and then experiencing massive layoffs.

I am a marketing comms professional who has made a habit of hopping between industries, because I love learning something new. Legal, education, government, real estate, I've done a bit of everything. Tech was a fun new opportunity to learn about the products we use every day to stay connected. But that feeling crept up again, as it always does, the feeling of wanting something more from your job, finding something more meaningful in the work that you do.

One day, we were preparing for a new product launch, something that should be fun and exciting, and I'll never forget a co‑worker of mine was completely berated during a meeting. Someone who works so hard for this company was torn completely apart for asking to leave early. Why? So he could go above and beyond by picking up the slack for our understaffed help desk who were drowning in requests after the holidays.

Little did they know that this colleague also lost a close family member just that morning, but I knew. And watching this harassment towards someone going above and beyond at their job while they were mourning was too much for me. I opened up my Indeed account and started sending out applications that day.

Now, my new job is kind. I could tell that from their website, their social media and our early correspondence. It is a non‑profit whose mission is to cure a rare disease that affects children and people all over the country, all over the world. It's people‑centric. It's primarily women who talk to each other with respect and take long walks together on lunch. It's the type of workplace where you stay late and you don't keep track of your hours, because you're raising money for a good cause.

I was so excited to be starting a job where I felt like I could really do something with heart. It's a grander purpose than just selling a product. I wanted to make a difference and they were doing that in real time and they were nice.

On my first day of work, we celebrated the approval of a new treatment. An FDA‑approved medication was about to hit the shelves thanks to the hard work my company had done. While it was not a cure, this was a huge first step and I was going along for the rest of that journey with them. How exciting, right?

Except something felt empty about it to me, which it feels bad to think and even worse to say. Those first few days I was thanked in abundance for joining the team, for making a difference, for being part of this incredible milestone, something the organization has been working toward for decades.

But what has little me done? I've literally done nothing. I've plugged in my MacBook and watched exactly three training videos. I felt undeserving of the celebration, overwhelmed by the joy surrounding me whose presence I hadn't earned.

I started to miss my tech job where we did nothing of real consequence. Sure, we succeeded in our roles and I think we did a standout job in the industry, but at the end of the day, it was just a job. We slacked off and BS‑ed around the office. We could half‑ass a project on a bad day and the consequence for not working hard was no bonus at the end of the quarter.

At my new job, the urgency was real. Lives were on the line. The consequence for not working hard is no cure for thousands of people suffering. The gravity of that hit me very early on.

But as bad as it sounds, I fantasized about returning to my tech job with my old friends in my old community. Sure, we'd be getting yelled at for going above and beyond in our roles, but we'd be together, right? I knew they hadn't filled my role yet and they might take me back.

But something felt bad about leaving and something felt bad about staying. I was stuck between returning to a great community of friendly faces and suffering through meaningless work and toxic upper management or contributing to an incredibly worthy cause with kind people, but still feeling like an outsider.

In my first few days at my new job, I received a card from a parent of a child with a disease. I would read this one specific line over and over again multiple times a day. “I promise you, you will never regret your decision," it said.

I wanted to believe it and I felt like an asshole during the times that I didn't. And it didn't make it easier that I had no connection to the community prior. No one I knew had the disease. I hadn't even heard of it beforehand. Sure, others had started in the same boat as me, but now they've been here for years. They've been adopted into it already and got to know people who had it and loved people who had it.

And now I, this person with no experience or understanding of this disease, was a mouthpiece for an organization, for a cause that I did not understand firsthand. I was supposed to use my voice to create change. Was I the right candidate for that? I felt like a well‑meaning ally at a Pride parade giving a speech about a prejudice I had never experienced.

The struggle continued for months, but, over time, I started to think of myself in that way, like I was an ally. What can I do to amplify the stories of others? What is my role in uplifting those voices? How can I use my expertise to help this community that I am not a part of but in alliance with? And it got easier day by day.

What helped the most, I think, was making friends. I always remember this one night where one of my colleagues, a young adult. Her name is Lorraine, and she lives with this rare disease, actually. She texted me about 10:00 PM and said, "I really need your help."

What did she need my help with? Is she okay? Is she hurt? Does she need someone to talk to because she's having a mental breakdown? I responded right away and I stared at my phone with bated breath until she responded.

“Can you make this pretty?” It was a flier for an upcoming fundraiser. That was an emotional rollercoaster for nothing. But I knew in that moment, because of how concerned I was for her well‑being, that she was more than just my colleague. She was my friend.

When I finally met Lorraine in person, we hugged tight and I knew I cared about her immensely. Something sparked inside me. I had love for Lorraine. I had love for others who live with this disease. Did this make me part of the rare disease community? This group made up of individuals and their loved ones, am I one of those loved ones?

I thought about it and I realized it's not my genetic makeup or my familial relationship to someone with the disease or how long I've been working for a supporting organization that makes me part of a community, it's my humanity. Aside from benevolence, there's no prerequisite for being an advocate.

And while I still feel the gravity of this role as communications director, the weight has gotten easier to bear as I realize doing my best is more than enough. I know that whatever I'm able to give makes a measurable difference.

I spoke to Lorraine about this emotional roller coaster I had been on in my first few months on the job and, well, expressed her initial hesitation with me, a girl who had no emotional ties to the rare disease community. It was my eagerness to help and learn that made her believe in me.

"You treat it like a person," she said, "not just something you're working on. Let that sink in.”

So, now, I have this new path and these amazing new connections. And those old connections, they don't go away either. I mean, I talk to my old colleagues all the time and they're lifelong friends. Well, the nice ones at least, just like Lorraine and my other new friends are.

In fact, a colleague from my old tech job reached out to me recently. They have a new position open, one I would be perfect for, as I know all the products and I know all the people. And if I applied, they said there was a pretty high chance I would get the role. If that had happened in my first few weeks here, oh, man, I can't say what I would have done. But now, almost a year in, I had no hesitation about politely declining. I've found my community.