My daughter has narcolepsy: an interview with Susan White
/
Erin White
Narcolepsy changed everything for Susan White. When her daughter, Erin, was diagnosed at the age of 24 with this mysterious, incurable disease, Susan was recovering from breast cancer. She was suddenly thrust into a new world of bills, uncertainty and diagnoses. Susan shares about the difficulty of caring for an adult child, the challenges of the workplace, and the importance of hope.
You can listen find the Handle with Care podcast on Apple Podcasts, Google Play, and Spotify. And you can listen to the episode here:
Erin and Susan White
Here are three key takeaways after my conversation with Susan
It can be very isolating to have a sick adult child. Susan talked about how isolated she felt, how co-workers did not know how to reach out. Susan reminded us of the importance of checking-in. If you know that a co-worker has something hard going on in their personal life, it can be immensely meaningful to periodically ask how they are doing. If you are prone to forgetting, and many of us are, take time to write it down in a file do that you can remember to follow-up. Your intention and care will help to remind them that they are not forgotten.
If you have just absorbed hard news, it could be helpful to take a leave of absence. Susan reflected that stepping away earlier would have allowed her the space to breathe and get things like insurance in order. Does your company offer this kind of support and space to employees during times of disruption?
If someone on your staff is experiencing a rare disease, or supporting a loved one that is suffering, the expense and the process of information gathering can be immense. Susan spoke about her Costco breakdown and the many hours she spent researching and participating in support groups. Your friend or co-worker is likely navigating complex support systems and financial concerns in the midst of work and other life commitments. Be patient with them.
If you would like more information on the support networks that Susan mentioned, please visit the Narcolepsy Support Network (link below)