Chelsea Cirruzzo is a health policy reporter at Inside Health Policy in Washington, D.C. She also writes freelance stories for D.C. news outlets. She was diagnosed with endometriosis a few years ago.
Hannah Wise, social strategy editor at The New York Times, contributed to this article.
When I was 16, I knew one thing: I wanted to be a writer in Washington, D.C.
But at 16, there was also something I didn’t know: why my periods were so astronomically painful.
Now, at 23, I have the reporting job in Washington and the diagnosis I lacked at 16. I have endometriosis, a chronic pain condition that causes tissue similar to that found in the uterus to grow elsewhere.
During pain flare-ups, my abdomen feels like it’s full of fire that radiates into my lower back and even down my legs. When I’m in the middle of making calls to sources, walking around Capitol Hill or writing stories from my desk, it’s like a tug-of-war: My body aches to get into bed wrapped around my heating pad, but my head is determined to hold my recorder in front of sources or keep typing.
I’m not the only one. According to a report published by the CDC last year, one in five adult Americans has chronic pain. The same study found that chronic pain impacts more women than men. Countless women, especially women of color, have said they struggle to get doctors to believe their pain and treat it accordingly. For me, it was four years after my symptoms started that I finally heard the word endometriosis.
Then there’s chronic pain compounded with the experience of being a journalist: We work long, unpredictable hours, spend lots of time hunched over computers or on our feet, carry heavy equipment or even have to appear on-camera. It leaves little room to see doctors, curl up in a fetal position, or even just hide during a pain flare-up.
This article originally appeared in an issue of The Cohort, Poynter’s newsletter for women kicking ass in digital media. Join the conversation here.
I’ve learned to balance both my demanding reporting job and my chronic pain. Here’s my advice, along with tips from other women in media with chronic pain:
Be realistic with people
It can be difficult to disclose your condition to your boss or coworkers. However, doing so can release a weight off your shoulders and foster an understanding in your workplace of what you need to succeed without feeling like you’re hiding a part of yourself. Remember that you have the power to share how much or how little you want (the Americans with Disabilities Act protects you from backlash if you disclose a chronic illness).
Focus on these areas:
- What you need at your workspace, like a standing desk or a dark space to retreat when a migraine hits. Sarah Cammarata, a digital producer at Politico Pro who gets frequent migraines, brings sunglasses or a screen shader to prevent an attack.
- What you need while working to be more successful, like help carrying heavy equipment, regular breaks to sit down or easy access to a bathroom.
- The best way to contact your editor or teammate should you need to leave work, go to an appointment or work remotely.
It’s important to remind people that you can still do your job, but you may just need to alter the way it’s done, said Maggie Miller, a cybersecurity reporter at The Hill who has chronic back pain. “That doesn’t make you a bad reporter, that simply makes you human,” she said.
If you’re managing someone with a chronic illness, don’t ask for any more information than your employee has chosen to tell you. Frame the discussion in a positive way and ask what you can do to make your employee more successful. Know that some parts of having a chronic pain condition can be more embarrassing than others (like the time my endometriosis caused me to bleed nonstop for a month) and be understanding of needing extra time away from a desk.
Be realistic with yourself
You also need to set realistic expectations for yourself — and that might mean planning ahead and knowing what triggers your pain. Knowing what you can do to make things easier ahead of time means no surprises.
Set aside time to study up on your insurance. For example, mine covers pelvic floor physical therapy, but I recently found out that it doesn’t cover a medication specifically for endometriosis — which meant I had to craft an appeal to my insurance company, a shockingly difficult task for a health reporter! My mom gets a lot of calls from me venting about insurance and surprise bills upending my monthly budget.
It helps to document interactions with your insurance company and to keep your doctor in the loop about what your insurance is and isn’t covering. I even keep a large binder near my bed of correspondence with my insurance company and paperwork from my doctor.
Work remotely on your bad days
Some days it can be hard to leave your bed, so use your sick days or time off — you have them for a reason. If you still feel up to work, one health care reporter who has migraines said she keeps her ask short and sweet: “I’m not feeling well, so can I work from home today?”
If you’re a manager and you know an employee with a chronic pain condition may need to use a lot of sick days, proactively discuss with them their options should those sick days run out. You can also craft a universal remote work policy that outlines how frequently your employee should be in contact, how often they can work remotely, and what needs to be done when they’re not in the office.
Go to therapy (or practice self-care)
As often as you stop and take note of the physical state of your body, also take note of your mental state. According to the CDC, chronic pain is associated with depression and anxiety. On top of that, journalists witness difficult and traumatic news on a daily basis.
“It’s a vicious feedback loop because I have physical pain that exacerbated my mental health, and poor mental health that leads to me sleeping poorly and not caring for myself sometimes as well as I should,” said Daylina Miller, a multimedia journalist at WUSF Public Media with nerve pain. She said that after going to therapy, her mental health improved a lot.
If you can’t get to therapy, take care of yourself in other ways:
- Read this Poynter article on covering trauma as a journalist.
- Lean into your community by joining Facebook groups for specific chronic illnesses or Riotrrrs of Journalism to feel supported (but always ask your doctor before taking any health advice from people in these groups).
- Exercise to the extent that you can — for example, I do gentler exercises like yoga during bad days.
Use your skills to share your story
If you’re comfortable, using your skills to share your story can be therapeutic and educational, like Buzzfeed.com Deputy Director Lara Parker does in stories and videos about her endometriosis.
“I also chose to open up about it because I knew that I had the platform to do so and I wanted the conditions that I live with to be taken more seriously and given more attention,” Parker said.
Alexis Egeland, a crime reporter at the Las Vegas Review-Journal who also has endometriosis, blogs about her condition, which has opened up less awkward conversations with her coworkers. “I’ve only had a face-to-face conversation with one or two of my coworkers about my condition – others have simply heard from me that I have ‘health issues.’ But I did write a few blog posts about my condition which I shared to social media, so many of my coworkers read that and were able to learn about my condition and what it’s like for me,” she said.
Focus on what you can control
Fiza Pirani, a freelance writer and editor who has frequent nerve pain and headaches, went full-time freelance after realizing she needed to be in complete control of her schedule and time for a bit. This shift, she said, has been hugely positive for her.
“That’s a very unique strength, to be able to make adjustments and see progress,” she said of those with chronic pain.
Opting into the self-employed life isn’t feasible for everyone, especially when you think about insurance and care continuity. But, there’s still a lot you can control in our digital media environment.
Nikki Bolden, a social media manager at North Texas Daily with endometriosis, often works from her phone when she’s not feeling well.
“There are always ways to work around your chronic pain,” Bolden said. “Do what is best for your health first and foremost, because you can’t do your job if you’re not well.”
***
Thank you to everyone who opened up to me about their chronic pain. And to every Cohort reader with a chronic pain condition, know there will be some bad days. There will be doubts. But for every brick wall you hit, there’s another one you just made it through. For me, that was making it to my first job in journalism two years ago. Now, I’m climbing higher as a reporter in my second and still pushing to go even further.
My 16-year-old self would be proud. I’m rooting for you.
Cohort in conversation
By Hannah Wise
When I was diagnosed with Crohn’s disease in 2015, I felt like I was on a roller coaster. There was so much information coming at me about how I would have to change aspects of my life. Anything I put in my body became front and center from food and drink to a long list of medications. Managing my stress, in a stress-filled industry, was top of my concerns.
Crohn’s disease is an autoimmune disease that affects the gastrointestinal tract — from the top to the bottom. My disease is mostly managed and kept in relative remission with expensive immune suppressing medications, keeping a careful diet and noticing when my stress level is creeping up.
In the last year, I managed a team during a significant newsroom layoff, finished my master’s degree program, accepted a new job at The New York Times and moved halfway across America. To say that 2019 has been a stressful year is an understatement.
I’d put my body through too much and in September my Crohn’s flared back with a vengeance. I am a single lady with an amazing cat and an apartment filled with plants — not exactly the company you want when your thermometer reads 104 degrees and you can barely muster the energy to get out of bed.
Ultimately, I spent eight days at Mount Sinai Hospital to get treatment, but I was far from alone. My Cohort sisters, the New York journalism community and my other friends mobilized to make sure I had what I physically and emotionally needed. Friends who were local kept me company in the hospital, others took care of Brünnhilde and my plants at my apartment. I was especially touched when members of the Cohort pooled their money to send gift cards for delivery services once I was back home so I could focus on healing and not cooking.
The nature of chronic illness is that it is a part of you for your entire life. I’m grateful that my Cohort is, too.
Tips to help a friend in need:
- Gift cards are amazing.
- Do some research about their diagnosis. It can be exhausting to explain the ins and outs of a new aspect of your life over and over again. I appreciated when friends or family did a little reading about Crohn’s and let me fill in the details — but understand if your loved one doesn’t feel like sharing.
- Be understanding if plans need to be altered or canceled. Still invite them, even if you are pretty sure they will be unable to come.
- Don’t only see their diagnosis. I cannot recommend highly enough reading this book of essays from The New York Times disability column to gain a better appreciation of the full spectrum of approaches different individuals have to living with a disability.
- Ask and care about how someone is doing. Invest in their well-being.
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