Self-Employment and FA: An Interview with PatientsLikeMe
I recently joined an online community called PatientsLikeMe, and they interviewed me about living with a rare disease and being self-employed. Here's what I had to say!
Can you tell us a little about what you do for work today and how your career has evolved since your FA diagnosis?
I am a self-employed graphic designer and I mainly do branding for small businesses. I’m also doing a lot more advocacy work for FA, which I love.
I studied graphic design in college and also got my FA diagnosis right before I graduated. After college, I worked at a marketing agency for 3.5 years. I ended up leaving to pursue self-employment because working full-time in an office was becoming too difficult due to FA progression.
What are some of the biggest benefits of working for yourself or having a flexible schedule while living with FA?
If I need to sleep in or rest during the day, I can. If I have a doctor, chiropractor, physical therapy, etc. appointment, I can go and I don’t need to report to anyone or take PTO. It’s been very helpful to set my own schedule and pace to suit my needs.
What challenges have you faced, and what strategies, tools, or accommodations have helped you continue working successfully?
Getting approved for Medicaid for my health insurance was a huge task, and I feel like I have to consistently self-advocate in order to receive those resources that I need. It’s challenging for sure, but having that insurance coverage allows my self-employment income to be more sustainable. I’m also in the process of getting an adaptive vehicle using funding assistance through my state. There have been so many steps so far in that process, but I’m excited to regain some independence and be able to meet with clients in-person again.
What advice would you give someone with FA who wants to keep working but isn't sure where to start or worries they won't be able to?
There are plenty of job opportunities out there. It may not be what you had originally envisioned for yourself, but if you have determination and work ethic, you’ll find the right fit eventually. Your perspective as a disabled person is inherently valuable. I’ve learned that leaning into advocacy and sharing my unique story has brought me numerous career opportunities, and I am excited for the possibilities of where my business could take me.
Has working in a way that fits your needs changed how you think about success, ambition, or your identity?
This concept has been challenging for me over the years, since I am constantly wanting to be productive, succeed, and experience growth. But FA has taught me that resting and self-care are huge parts of my job. I can’t work if I’m exhausted or I’ve hurt myself. I’ve had to rewire my brain on what it means to be successful and ambitious. This is an ongoing battle, but I’m getting there!
If someone wanted to explore freelance, remote, or flexible work today, what practical first steps would you recommend?
What is fulfilling to you? If you’re an FAer and want to be employed, the work should be meaningful to you. Find something you actually want to do, and don’t be afraid to ask employers to be flexible. You’ll find the right opportunity for you if you are clear about what you’re looking for.
Living with Friedreich’s Ataxia, I have always found it really helpful to see how other people navigate the challenges that I have also faced. That’s why I’m so excited to be a part of the PatientsLikeMe community! If you are a member of the FA community, I recommend checking it out.
If you join, let me know! I would love to connect with you there.
