3 Illuminating Career Questions for Young Adults Living with Rare Disease

November 5, 2016

By Joan Friedlander

I recently participated in a panel discussion at the CureDuchenne Family Summit in California. We talked about the opportunities and issues associated with navigating the transition from being a dependent teen at home, to considering college and future career options. I was specifically asked what I might advise young men who are starting to look beyond school to setting initial career goals. Even without the additional factors that come with complex illnesses, setting initial career goals is no simple task.

To help you get started, I offer 3 big-picture questions to contemplate as you think about work options. They are Why, Who and What?


Most people start with the question “what do I want to do?” Although common, it’s not necessarily the best first question. Many adults find themselves in a career or job they don’t like because they didn’t take time to consider why – and if – they even care. I’m inviting you to dig deeper so that you have the best chance of starting off in a positive direction.

Why is all about your motivation, what’s driving your interest? Consider the following 3 common motivations:

  • You are passionate about a cause, a product or an injustice.
  • It’s important to you that your work enables you to use your best and favorite skills, and allows you to work within your abilities; physical, mental and emotional.
  • You want to make money so you can support yourself.

It doesn’t matter what anyone else thinks – and they will have their own opinions. It’s important to be honest with yourself about what motivates you.


If you look closely enough, you’ll see that most businesses are designed to improve the lives of others. They might not always succeed, and we’ve seen what happens when greed becomes a driving force. However, the most fulfilling work and successful businesses are built on a positive mission.

For your consideration:

  • Who or what do you most care about?
  • What kinds of people do you most enjoy spending time with? (If you prefer to work more independently, it’s OK. You might enjoy working with people who let you do so!)
  • What could you talk about “all day long” and with whom?

Knowing who you want to serve, help, work with, etc., benefits you in several ways. It helps you market yourself and your services, and it helps the people in your life refer business or job opportunities to you. Furthermore, knowing who you’d like to work with – or for – will help you identify organizations where you might find these opportunities, and even help you in the interview process, as you’ll be able to talk authentically about your desire to work for the company.


If you’ve ever asked someone what they do, they’ll usually tell you their job title and the name of the company. This does not answer the “what” question. Instead, “what” points to the problem being solved. It doesn’t matter if you’re selling widgets, designing clothing, or working for an advocacy organization, there is always a problem being solved or an opportunity being created.

To the best of your ability, make a short list of problems you’d like to solve, or opportunities you’d like to create.

For example, let’s say you know you enjoy writing and, if possible, you’d like to pursue a career or business in which you get to write at least 60% of the time. This is a good start but it’s not specific enough. The field of writing covers everything from technical writing (preparing detailed instruction manuals) to content marketing (helping businesses with their online presence) to journalistic writing (for newspapers, magazines or news shows) to fiction writing (paid short stories or novels). If you could answer why you want to write, who you want to write for, and what kind of impact you’d like to have, it can help you set an initial goal.

Putting it All Together

Once you have a sense of why you want to do what you want to do, who you want to do it for, and what problem you want to help solve, you can test your ideas out through volunteer work, internships or short-term employment projects. These kinds of experiences can further refine your direction, and/or show you that what you thought you wanted isn’t quite right. All good!

If you need assistance, there are many resources out there for you, everything from State-run vocational assistance programs, to career or business coaches, to school guidance counselors. There are even tests you can take if you’re not sure what kind of work you’re best suited for.

You can’t make a mistake!

Some people know what they want to do early on in life. Many don’t. Many careers take right and left turns along the way. You don’t have to make a forever decision on any of these questions. Just start with what you know now, take those first steps, and see what unfolds.


Joan Friedlander is the author of Business from Bed: the 6-Step Comeback Plan to Get Yourself Working again after a Health Crisis. Joan is an expert in working and living with a chronic illness. Through writing and coaching, she guides those who are required to reassess their direction in life – and business – as they recover from a health setback. For more tips from Joan, and to subscribe to her newsletter, Capacity Matters, visit

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