Kathy Reagan, creator of the FUMS website and podcast, founded Patients Getting Paid in 2021. Her mission is to help people with chronic illness find and create work that accommodates their health and generates income. In this column, she shares advice, resources, and stories to help others navigate the world of work while living with a chronic illness.
I was diagnosed with multiple sclerosis in 2008. It came out of left field — I had no previous symptoms, and I was otherwise healthy.
One morning, I woke up with “strange” eyesight. I couldn’t have told you what the problem was at the time, but over the next couple of days, my vision doubled. I also had crippling fatigue but thought I was coming down with something. And I’d had some numbness and tingling.
I had two young daughters (4 and 6 years old), and I was a stay-at-home mom. The neurologist said it was a good thing I didn’t work outside the home because stress is the very worst thing for MS. It was clear to me that he had never stayed home with kids. Now THAT job is stressful! He told me to never go back to work.
I didn’t listen.
As soon as my youngest was in school full-time, I found a marketing and PR job with a local physical therapy company. I LOVED it. I was responsible for three clinics initially. Within 2 years, that number had jumped to eight, and that stress the doctor had mentioned being bad for MS? It officially arrived — and my MS objected loudly.
The tipping point came while driving. I couldn’t decipher between the gas and brake pedals and wasn’t totally sure which lane I was supposed to be driving in. I knew that I wasn’t alright and needed to get off the road. That was my last day being employed by someone else.
I went home and took care of myself. I rested, I ate well, I exercised, and I didn’t stress. Well, I did stress about one thing: My paychecks quit coming, but my bills didn’t. I was married at the time, and thankfully, my husband’s income and health insurance carried us, but I needed to find a way to take care of myself and make some money.
Thus ensued my mission to find work that would be flexible, remote, and well-paid.
I started a blog about my experience with MS in 2011 and added a podcast to it in 2015. I knew people monetized those things, I just had no idea how they did it. I decided to figure it out.
Somewhere along the way, I found enough legitimate information and training to make a little money with my FUMS website and podcast through affiliate marketing. It wasn’t much, but it was confirmation that it was possible.
In a twist of luck, someone from Healthline — the top health information site — stumbled on my podcast. He hired me to do six episodes for a new app they were developing for people with MS. Next, I was asked if I wanted to be the “guide” for the app’s community forums. Ummm, yes, please.
Then, the editorial department came a-calling and asked me to write about my life with MS. I said yes, and shortly thereafter, the social media team approached me about being the admin for their MS Facebook page. Yes, yes, and yes.
Just like that, my patient advocacy business was officially launched. Other online health information companies reached out, and the rest is history.
I had an epiphany one day, realizing I’d replaced my former full-time income. In fact, I was making more money and working on my own time from anywhere (sofa, bed, recliner, hospital infusion center, etc.). I never had to ask for time off to see my doctor, and I could rest when needed. I was taking care of my health and generating an income.
I realized right then and there that I had an obligation to share my knowledge and experience with the chronic illness community.
In September of 2021, I launched Patients Getting Paid to help people with chronic illness learn to find and create work that both accommodates their health and generates an income. I provide coaching, coworking sessions, accountability, workshops, and training to help people see the possibilities that exist to work flexible, remote “jobs” or even to start their own online businesses.
I call us “chronicpreneurs.” It’s an amazing, uplifting community of people who speak the same language — chronic illness — and support each other as we find our way to purpose, productivity, and income.
You, too, can be a patient getting paid — and it doesn’t have to be in patient advocacy. What’s your knowledge base? Education? Training? Hobby? Interest? Passion? That’s a great place to start.
In this column, I’ll be sharing tips and tricks for creating your own path and finding legitimate opportunities while prioritizing your health. We’ll look at how to find employment that allows for flexible remote schedules. Or maybe full-time is too much, but you’d like to learn about “side hustles” or one-off gigs and freelancing opportunities.
Are you concerned that working could put your SSDI in jeopardy? I’ve got you.
And I’ll welcome your questions and topic suggestions. I hope you’ll read it, share it, comment on it, leave any questions you may have, and generally get excited about all the potential.
Fact checked on September 20, 2023
Have thoughts or suggestions about this article? Email us at email@example.com.
About the author