Four Lessons on Managing an Invisible Illness While Building A Business

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One of my favorite quotes is: “Take care of your body, it’s the only place you have to live.”

It’s a sentiment that, as a business owner who is managing an invisible illness, I remind myself of frequently. It’s also something I discuss with clients — whether they have an invisible illness or not — because they’re all in the early stages of starting or running their small businesses.

That’s a hard enough feat, and it’s easy to let your health slip when you’re spending every waking moment making clients happy or ensuring that systems are running smoothly. When you add an invisible illness to the mix, it can feel downright impossible to manage both a business and an illness.

As the host of the podcast Made Visible, I’ve had the chance to speak with other people about their experiences in navigating invisible illnesses. When I’ve talked to entrepreneurs, it’s become clear that many of our experiences are shared. We’ve all hit bumps in the road, but we’ve also used our illnesses to catalyze important changes in our lives and livelihoods, too.

Here are four important lessons I’ve covered with my Made Visible guests on how to manage an invisible illness while running or starting a business.

1. Taking care of your health is the only way you can give your best to your clients.

I was raised to never give less than 100 percent, no excuses. But in 2012, when I had to have a quarter of my right lung removed, it became clear that going forward, that mantra would no longer work. I needed to make managing my illness (a rare immunodeficiency disorder called Job’s Syndrome or Hyper IgE syndrome) a priority, and that meant changing the way I did things.

My new mantra is one I was initially less comfortable with: I know my body, and I know when I need to slow down or postpone commitments. I can’t give my clients or my podcast guests my undivided attention if I’ve had a sleepless night or am feeling run-down.

I know it sounds strange to be saying that I’m fatigued, especially when I look fine, but I don’t have your average 33-year-old’s body. I’ve had to accept that I need a certain amount of flexibility in my schedule in order to manage my health, and that’s not something I ever thought I would say while growing up. But it’s the only way I can give the best version of myself to my clients and guests.

Career coach and consultant Tiffany Dyba, who just recently finished her last round of chemotherapy for stage 1 breast cancer, echoed this sentiment on Made Visible. “I have learned to get better about making time for myself, but when you run your own business, you are so invested [that] sometimes it can become easy to neglect yourself,” she says. “I oftentimes have to block time on my calendar for [myself], just so I don’t forget that if I am not relaxed, I won’t be at my best for my clients.”

Of course, scheduling woes can be a hard pill to swallow. Made Visible guest Lauren Chiarello, founder of Chi Chi Life, is a two-time cancer survivor who underwent emergency surgery for an ectopic pregnancy earlier this year. Two days after her surgery, she was slated to produce a large-scale event alongside a good friend. “I pour my heart and soul into all that I do, and I want to be consistent for my clients and students,” Lauren says. “It was difficult — both personally and professionally — to not complete the project and my commitment. I also wasn’t able to teach for a while — two weeks with my private clients and six weeks in the studio.”

Despite that setback, Lauren says, her business recovered step by step. “My body and mind are still a work in progress,” she says. The same could be said for most of us, invisible illnesses or not.

2. It’s about progress, not perfection.

When I have particularly busy days, I try to take the time to integrate things that nurture my body (like a healthy breakfast and lunch, or twice-daily meditation). But often, I’m rushing to fit all my commitments in, and I ultimately have to skip some of these steps. It feels like it should be easy to accomplish these things on any given day, but I find it quite challenging. It’s times like these when I have to remember that we all have limitations, and it’s about aiming for progress, not perfection.

Akilah Cadet, executive coach and founder of diversity and inclusion consulting firm Change Cadet, echoed this sentiment on a recent episode of Made Visible. She has been managing tachycardia, coronary artery spasms, and orthostatic hypotension for 15 months, and she’s still searching for the underlying diagnosis for the pain on the left side of her body. At this stage in her journey, she knows she has to strive for balance.

“I get to make this world a better place, but now there is only so much I can do in a day,” she says. “The biggest challenge is that I’m tired most of the day and in pain the whole day, but I love what I do, so it literally helps with the pain. As a result, I really have to think about my time and energy so I only work three days a week, allow recovery time for travel, have more remote meetings, and say no a lot more than before. I have to listen to my body first.”

“I do at times feel being sick has limited my full potential and growth, but oddly enough, being sick has been the ultimate self-love journey,” she adds.

invisible illness

3. An invisible illness, in addition to the challenges it brings, can be a motivating force.

My surgery in 2012 — and how I felt when I went back to the grind of work — was a major reason why I left my job to start my own business. Of course, I never imagined that a few years later, I would be starting a podcast about invisible illnesses. In some ways, though, it’s not totally unexpected. I had been connecting with people in the health space for years, and as managing my illness became more of a personal priority, I sought out the support and advice of those who had faced similar challenges.

For Lauren Chiarello, having cancer wasn’t just a factor in starting her business — it was a major influence. Her business, Chi Chi Life, blends fitness, event production, fundraising, and cancer advocacy, and Lauren says that she doubts she would have started the business had she not been diagnosed with Hodgkin’s lymphoma at the age of 23.

“Beating cancer twice has taught me the power of the human spirit, especially [the power of] community,” she says. “Kindness and compassion are values that are integrated into my business — and life. My hope is to inspire through my teaching — sharing my resilient spirit and my deep belief that our bodies are precious vehicles.”

Similarly, after experiencing breast cancer, Tiffany Dyba has incorporated advocacy into the work she does. Right now, she’s consulting with a new media company called SurvivorNet, which is dedicated to building a community around cancer warriors and engaging top medical professionals on a variety of topics. “I am so engaged in helping others with cancer that it has given me a new sense of purpose,” she says.

To the healthy segment of the population, It may be surprising to see that an invisible illness could have any sort of positive outcome. But for many founders and freelancers who live with an invisible illness every day, it is understandable why someone with an invisible illness would incorporate advocacy and awareness into their work. There is a natural desire to share resources with others that is often a motivating force for good.

4. Rewriting your story and your professional identity can be powerful.

I didn’t talk about my invisible illness until my surgery in 2012. Up to that point, I thought my invisible illness was something to be ashamed of, and only my parents knew. I didn’t want my identity to center around my health, so I kept quiet until I literally couldn’t keep quiet any longer.

Now, I realize how important it is to share my story, even if it’s not the story I thought I’d be telling. After a few months of staying quiet about her health challenges, Akilah Cadet had a similar realization.

“At first I didn’t tell any of my clients, but at the third ER visit in three months, I was like, this heart thing may be part of my story,” she says. A day after she was released from the emergency room, she had to introduce herself to a group of fellows that she would be coaching for about a year. While she wasn’t planning on it, she ended up sharing her health journey with her audience. And the response wasn’t what she expected, in the best way possible.

“The judgement I thought I’d feel was replaced with a celebration of me being my true authentic self,” she says. “When I coach leaders, I tell them the key to a happy workplace and life is to be your true authentic self — yet when I was hiding my struggle, I was hiding. I literally had to take my own advice, update my story, and honestly come to terms [with the fact] that I may have heart problems for the rest of my life.”

While you might initially be resistant to rewriting your story — especially if you’ve always hid your invisible illness — there are benefits to accepting and embracing new aspects of your identity.

“Now that I am public about my health, my story and health struggle brings inspiration to others but, honestly, I am the one who is inspired by them to keep fighting for a diagnosis,” Akilah says.

As a small business owner, it can be scary to reveal what’s going on with your health, and most people have fears about opening up. But if people with invisible illnesses don’t speak up, other people will never get a glimpse into our world. By sharing our truth, we can all learn what it’s like to have an invisible illness, and — hopefully — take steps toward more empathy and understanding.

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