Job-Seeking as a Caregiver for a Child With a Rare Disease

Finding a job with a supportive and understanding employer can be an ongoing challenge for those of us raising a child with a rare disease.

Complex situations and unique challenges that come up unexpectedly can result in more terminations than hires. These negative experiences can shut us down and make us afraid to put ourselves out there in the future.

Knowing what you need from an employer ahead of time does not guarantee you will find the right job, but it allows you to be one step ahead of where you were before.

Why I started and left a new job

In my personal experience, open communication from interview to employment is crucial when you have a family member with a rare disease. Honesty allows you to lay your situation on the table and walk away if it doesn't work out with no guilt.

Earlier this year, I returned to work full-time after staying home for 7 years doing freelance work. I returned to work to get better benefits for my kids. I felt grateful to get hired by the local school district where my rare disease child attended school; my family's situation was known from the start.

The hardest months of my life

Shortly after returning to work, my oldest child got sick. This was our first real rare disease wake-up call. To say this was a challenging time was a true understatement. It was the hardest few months of my life. Although I felt fortunate to have supervisors willing to listen to the challenges and try to work with me, I also felt unfortunate that I had colleagues more interested in drama than empathy.

Eventually, after a month of trying to balance the needs of my child, my job, and the "drama," I made the choice that was best for my family; I quit with no regrets.

3 tips for job-seeking parents of rare disease children

From my experience, here are some tips of what to look for when searching for employment as a parent of a rare disease child.

1. Be honest about who you are

Transparency establishes a foundation of trust between me and my potential employer. It means being honest about who I am, what my life involves, and most importantly, what I bring to the table as an employee. Through this conversation with a potential employer, I am able to make an informed decision about the opportunity and decide if it is a good fit for me.

2. Seek out flexible work arrangements

Flexible work arrangements are a foundation for me as a rare disease caregiver. By finding a flexible employer, I am giving myself comfort and support to juggle unexpected situations that may arise. In my experience, working remotely and having flexible work hours throughout the day and night is a huge benefit. This allows me to work around the needs of my family, whether I am at home, in the hospital, or traveling, while ensuring my work-related tasks get done.

3. Embrace an inclusive work environment

Working for a company that encourages inclusion in all areas of its operations benefits me and my employer. Embracing diversity and including individuals with disabilities and their families allows the work environment to offer unique perspectives, experiences, and talents. In this setting, people can learn from one another and feel respected and valued for what they bring to the table.

Are you a caregiver looking for a full- or part-time job? Do you currently balance caregiving and other employment? Tell us more about your experiences. Share or ask questions in the comments below.