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How Chronic Illness Led Allison to Entrepreneurship

Living Well

January 11, 2024

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Design by Ryan Hamsher

Design by Ryan Hamsher

by Kathy Reagan Young

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Fact Checked by:

Jennifer Chesak, MSJ

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by Kathy Reagan Young

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Fact Checked by:

Jennifer Chesak, MSJ

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•••••

Multiple sclerosis prompted Allison Ratkovich to start her own business. Here’s how it allows her to prioritize her health.

In this month’s column, I’m featuring chronicpreneur Allison Ratkovich to share the story of her diagnosis, employment struggles, and decision to start a business that accommodates her health.

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Q&A with Allison Ratkovich

Please share your educational background, diagnosis story, and what work you did pre-diagnosis?

I have a bachelor’s degree in mass communications/public relations (PR) with a minor in marketing. I worked with the top two PR agencies in the world right out of college. Later, I held director of sales and marketing positions at several small businesses, including a fundraising organization for faith-based organizations, a compounding pharmacy, and a company that developed custom apps for corporate events.

However, as unknown health concerns mounted and I entered my 50s, I struggled to find jobs and experienced long-term unemployment. My last significant full-time position was at the Biltmore Estate as the National Account Manager, Benefits and Rewards, managing the corporate partnership program.

But my role was one of 400 jobs eliminated due to the impact of the COVID-19 pandemic. Since then, I’ve had two short-term corporate jobs that I lost quickly due to my limitations caused by multiple sclerosis (MS).

I now have a business that provides creative storytelling services to small businesses, solopreneurs, and individuals. As Kathy has brilliantly coined the term, I’m now a “chronicpreneur” tasked with finding a way to earn and achieve despite my limitations and because of them.

Being a chronicpreneur means embracing those limitations, and my professional endeavors allow me to prioritize my health alongside my business goals.

Since I didn’t have the luxury to retire, I had to ask myself what I was really good at. How could I provide something people need that would bring value to them and their business?

My journey with MS began in 2008. I was initially diagnosed with MS and re-diagnosed with transverse myelitis (TM) a month later. At the time, TM was considered a similar but different illness. Though I was told I had an increased risk of developing MS, I was given a clean bill of health.

With only 1,400 cases a year, TM is rare. Most people with TM do not regain use of their bodies. Fortunately, I fell into the small portion who do. But there were no follow-up recommendations. My doctors didn’t say it was necessary to get annual MRIs. I was told I had dodged a bullet.

My doctors now agree that 2008 was my clinically isolated syndrome (CIS), or the first episode of MS. By today’s standards, TM is considered part of MS and treated as such.

Over the next 13 years, I had several health crises, which I now know were likely relapses of MS — but no one connected the dots. I experienced medical gaslighting at its finest and worst, and I was plagued with self-doubt and shame.

I questioned everything my body was experiencing. I thought I was losing my marbles because I didn’t receive support in the medical community. They didn’t believe me, so I started not to believe myself.

At the end of 2020, I physically, mentally, and emotionally collapsed and ended up in the hospital. A month later, I mentioned the TM diagnosis in 2008 and asked my doctor if this could be a relapse, though I believed it to be a long shot.

My doctor stood up from his chair and said, “You had transverse myelitis?” He immediately called for an MRI, this time with contrast. I had several MRIs in the prior 2 years, but none with contrast. The new one showed “significant” damage indicative of tumors, strokes, and, of course, MS.

Finally, a neurologist specializing in complex neurological diagnoses gave me answers. In May 2021, I was again diagnosed with MS. I was 57. But instead of relapsing-remitting multiple sclerosis (RRMS), I had relapsed into secondary progressive multiple sclerosis (SPMS).

I lived with untreated MS for 13 years it appeared. And it went untreated because of how differently the medical community understood MS and TM.

What has your chronicpreneur journey been like, and how does your business allow you to better accommodate your health?

Journey sounds tame — my chronicpreneur journey has been a roller coaster ride. When I was figuring out how to work after my diagnosis, it was the height of the pandemic.

At first, I tried to keep doing what I knew: a traditional, 9–5 communications job. I found a couple jobs and lost them within 3 months because of performance issues. Because of my health.

After a severe fall and concussion last Christmas, I spent 45 days in hospitals and rehab facilities. After cognitive and physical evaluations, it was obvious that my limitations were significant. Working a corporate job was out of the question.

Since I didn’t have the luxury to retire, I had to ask myself what I was really good at. How could I provide something people need that would bring value to them and their business? At 60, what could I do that’s still relevant?

Being a chronicpreneur means embracing those limitations, and my professional endeavors allow me to prioritize my health alongside my business goals.

Having my own business allows me to work around the bouts of pain I experience multiple times a day. It gives me the flexibility to work when my body is cooperative and rest when it’s not. I can limit the number of clients I take on based on my health.

Despite being demanding in and of itself, I can design my daily schedule. While there are risks when running your own business with a chronic illness, the benefits far outweigh the drawbacks.

What does a typical day in your life look like?

I don’t have a typical day because of my unpredictable symptoms. I live with daily pain flares that stop my life in its tracks. Other symptoms like cog fog, fatigue, mobility and vestibular challenges, temperature intolerance, tremors, vision loss, and speech impediments also intrude on my days. But none are as consistent and debilitating as pain.

I start my day with meditation and movement: either yoga, somatic exercise, resistance training, or a walk. Then, I hit my office and spend the day working with the social media client I have at the moment. When I have pain, I can take a break. On days when my cognitive issues are horrible, I struggle to push through and tackle the low hanging fruit on my to-do list.

My work is all on my computer, including Zoom meetings with groups and clients. I set a timer that reminds me to stand up and move every hour. On days when I’m really productive, I enjoy a proper English tea at 3 p.m. to celebrate. I’m guilty of working too late at night, but that comes with being a chronicpreneur. But being able to work on my time without letting my clients down is an upside to keeping my days as “typical” as possible.

Does your chronicpreneur work provide a steady income?

I’m in the early days of launching my business, so it’s not yet a steady income. The income I get from my one client is negligible at this point. Growth cannot happen fast enough!

What do you do for health insurance?

I currently have Marketplace insurance but may have to rely on Medicaid in the new year. I learned in the hospital about the unspoken advantages of private insurance. Private insurance got me a bed in a preferred rehabilitation hospital, where more beds are designated for private insurance over Medicaid.

I also got into a private room in the hospital faster and spent less time in the emergency room. Approvals happened faster. Doctors responded faster. Administrators and nurses pointed these things out to me. Those 45 days in the hospital were terrible enough with the best care. I can’t begin to imagine what it’d be like without it.

What tools or software have helped you manage work and organization while living with MS?

I use Canva for design, branding information, and organization to manage my business and my client’s brands. I use Grammarly and Hemingway for writing and ChatGPT for assistance and prompting. Honeybook for CRM, document signing, and collaboration, and scheduling with Zoom.

Wix and Simplebooklet for my website and blog. I use OneNote, a considerable shift from my ingrained habit of taking notes by hand, which helps me organize and find things again. Also, QuickBooks and spreadsheets.

Have you incorporated or filed as an LLC? Do you recommend starting with a legal structure in place?

I haven’t yet, but I will file as an LLC this month. I believe in having a basic legal structure that meets all your needs and expectations.

I have another business idea that will affect how I create the LLC, so I’ve gotten counsel and researched how to prepare an LLC that incorporates the business as two separate entities. The second business may never happen, but setting up the LLC with the possibility in mind is prudent and more efficient.

What advice would you give to other chronicpreneurs who want to do something more flexible or remote, either full-time or as a side hustle?

Put your health first, and don’t compromise. Plan your time for flexibility. It will take you longer to do anything, but remember why you’re hanging your chronicpreneur shingle in the first place. Take the time to set up recurring systems and automation whenever possible, and be diligent with keeping detailed notes. Create new workflows that work around your disease symptoms.

What used to work may not work anymore, so don’t pound your head against a wall. I previously used notebooks to keep track of information and to-do lists, but it doesn’t work for me anymore. Now, I use a string wall with cards and major tasks clipped to the string. When I complete one, I take it down and add it to the stack.

I write notes on the back of each card with reminders for myself. After doing something the same way for 30 years, recognizing that it wasn’t working and finding a new process was challenging. This new workflow has made a considerable difference and works with the executive functioning issues I face. I don’t feel like things are falling through the cracks anymore.

I also recommend you join a group for accountability, like Bezzy and Patients Getting Paid. It’ll help you stay on track, and you’ll meet other chronicpreneurs you can talk to about working while dealing with chronic illness. It’s made a big difference in my journey.

You can follow Allison through her website or social media profiles on Facebook, Instagram, LinkedIn, Threads, and X.

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.

If you’re an entrepreneur living with a chronic condition and would like to share your story in this column, please reach out to me at Kathy@PatientsGettingPaid.com and your story may be featured in the future.

Fact checked on January 11, 2024

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About the author

Kathy Reagan Young

Kathy Reagan Young is a prominent patient advocate and the founder of two innovative organizations, FUMSnow.com and PatientsGettingPaid.com. She has become a leading voice in patient advocacy, driven by her personal experience with multiple sclerosis and having founded the Patients Getting Paid membership community to help people with chronic illness find and create work that both accommodates their health and generates an income. You can also find her on Facebook.

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