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Careers and Chronic Illness

I've been thinking about the idea of "a career" a lot lately. I spent 20 years working for nonprofit organizations, mostly in fundraising and development. I went into the nonprofit sector because I knew I needed to get a job (to pay rent, buy food, etc.) and wanted that job to mean something. I wanted to be a part of making a difference in the world—and with my love of writing, nonprofit fundraising and grant writing was a perfect match. For many years, I was content enough raising money for organizations doing good work.

In 2019, I was chosen as a 92Y Women InPower Fellow—a program for rising women leaders in NYC. It was an incredible honor and the first time I really started thinking about what I wanted my career trajectory to be. I started doing more work in operations as well as organizational development. I found this interesting and challenging in entirely new ways, and decided my goal was to become a Chief Operating Officer at a nonprofit.

But, as I've written about a bit before, my body had different plans. As I started learning to acknowledge the realities of living with chronic illness, I realized I also needed to reconsider what kind of career would best support my health.

What is a Career?

According to Merriam-Webster, a career is:

1) a profession for which one trains and which is undertaken as a permanent calling
2) a field for or pursuit of consecutive progressive achievement especially in public, professional, or business life

In many ways, even the idea of consecutive progressive achievement is antithetical to living with chronic illness. Indeed, a huge part of the challenge of chronic illness is that we do not get better. There are no cures. There's no permanent recovery. There are no perfect solutions.

This is one of the hardest things for people without chronic illness to understand.

In most cases, living with chronic illness either means progressive worsening of underlying conditions and symptoms, or a cycle of symptomatic flares. One day you're fine, the next you're incapacitated.

So the idea of squeezing a chronically ill body into a career that moves in a consistently upward direction is the classic round peg, square hole conundrum.

What Does a Career With Chronic Illness Look Like?

As I've increasingly connected with other people living with chronic illness, I've asked people about their work. How do they pay the bills?

The answers vary. Some people have needed to go on disability. Others work remote salaried jobs. Some work part-time. Some run small businesses or have developed multiple creative income streams. But what's consistent is that we all have to be creative and adaptable. We have to ask questions able-bodied people don't ask. We have to always be doing the calculus of how much our bodies can handle, even when our minds want to do more.

What would this new definition of a career be?

1) the work one undertakes to pay the bills without making oneself sicker
2) a calling that is interesting and engaging, but not all-consuming

This is the definition of career that I am learning to embrace, even if it's not what I imagined a year ago.

When Letting Go Can Be Good

Here on this blog and in my daily life, I've been grappling a lot with the idea of letting go of the false image of myself as able-bodied. Letting go is different from giving things up, which is what I spent 18 years of my life with chronic migraines doing:

For me, the experience of finding and managing triggers has been like shaving off pieces of myself. Winnowing down my hopes and dreams. Making my world smaller and smaller.

Instead, letting go of pretending to be able-bodied has freed me up to ask bigger questions. Do I need a career in a traditional sense or is there another way to contribute to the world and pay the bills? What do I value most in my life? And how do I prioritize what I value? What work do I enjoy doing, and what work is annoying and draining?

The answer for me has been to start a business. This fall, I invested in a 60-day Nonprofit Consulting Boot Camp to develop my business, and it has been transformative. I let go of so many beliefs about what a career should be and discovered what it could be.

So I'm charting my own path. Since August, I've tried all kinds of consulting work:

  1. I'm a research assistant for my favorite language learning company. I have learned so many incredible facts about languages—and rekindled my forgotten language-learning passion.

  2. I'm writing grants for a couple nonprofit organizations. Grant writing has been my bread and butter for so long, it's been wonderful to be able to help organizations that are doing such great things.

  3. I'm doing copywriting and SEO for a small business that works with mostly nonprofit clients. This is where I've discovered a brand new passion!

With each project and client, I let myself ask questions I never dared consider as a full-time salaried employee:

  • Am I enjoying this work?

  • Am I learning something and having fun?

  • Do I like working with this client? Or are they annoying?

Because my goal going forward is to do work that I enjoy, in a manner that works for me. I want to be able to say no and walk away from work that doesn't support my health. For me, that sounds like the ultimate luxury. And I'm going for it.


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