Support for Parents of Young Adults Living With MS
One of the biggest perks of blogging and advocacy work is getting to interact with people from all over the world. The internet really is a wonderfully supportive tool that is making the world a much smaller place, especially when you are living with a chronic disease like multiple sclerosis.
A unique set of challenges for parents
A unique group of people affected by MS has been reaching out to me more frequently for advice and support - parents of young adults with MS. These mothers and fathers of teenagers and young adults have a unique, and often overlooked, set of challenges. They don’t live with the disease themselves, and they aren’t quite caregivers. Their children are capable of making their own life choices, and are too old to be bossed around by a parent. They may no longer live under the same roof, but they often still provide their children with health insurance coverage or financial assistance while they are in college and getting their careers off the ground. These parents are already trying to navigate their children’s growing independence, and cope with empty nests.
Adding a life-changing diagnosis to the mix
Adding a life-changing diagnosis into such a huge period of change is tremendously stressful. Their son or daughter may be slightly too old to want their mom tagging along to doctors' appointments, and they can definitely make autonomous decisions for themselves, but at the same time, they still have significantly less life experience. They may recognize that they need advice, but be too proud or too stubborn to seek it out. Being young, they may have taken their health for granted up until now. They may not necessarily know how to put their health and wellbeing above the ever-growing list of demands they are faced with in adulthood.
Respecting their autonomy while nurturing them
Young adults have one foot in adolescence and the other in adulthood. It wasn’t too long ago that they depended on their parents' input and needed protecting, but what about now? Is there some sort of parenting instruction manual on respecting an adult child’s autonomy while simultaneously rushing to their side? For a parent, this can be like watching a car wreck happen in slow motion. They watch their child burn the candle at both ends and try to politely suggest that they rest, cool off, and take care of themselves.
It's a fine line
They try to walk that delicate line between nurturing and giving unsolicited advice and risking alienation. A few short years ago, they could ground their child, take away their car keys, or pull the “because I said so” card if all attempts at reason failed. They scheduled every doctor appointment, filled every prescription, and doled out teaspoons of medicine to ease fevers and colds. Now, it’s their child’s turn to navigate the healthcare system, which is a task that can be overwhelming to even the savviest patient. Part of parenting a young adult is letting them make their own choices, even if it means they fail.
I am a young adult with MS
I am one of the young adults, and I know my own parents must struggle to find the balance between hovering, and letting me (their grown, married daughter in the medical field) decide for myself when I’m too hot, need to rest, and when I need to de-stress. I am the first to admit that I tend to overdo it, and I’ve suffered the consequences.
Feeling guilty being a bystander
Sometimes, a gentle reminder that I’m going to get myself in trouble is helpful, although not always welcomed. And this is something that I hear often from parents. They want to help but don’t know how to do so without being controlling or overbearing. They feel guilty about, and even responsible for, their child’s condition and being a silent bystander is not an option. In the worst-case scenarios they watch on almost helplessly as their children skip MRIs, doctor appointments, and resist going on medication. They are just as scared as we are about all of the uncertainties ahead. Like us, they hope, pray, cry, and ride the roller coaster of ups and downs. Their child may have moved out of their homes, but MS has moved into all of their lives.
Support for these parents
Being a parent of a young adult living with MS can be a lonely experience. I tried finding a support group for them to join and found ones for caregivers, young adults, parents with MS, men with MS, etc. - but came up short on one that really addressed the unique needs of parents of young adults living with MS. In response, I decided to start my own community. It is small right now, but I think there are more people out there who can relate to this article and who would benefit from having a few friends that “get it”. If you are interested you can ask to join our Facebook group, we hope you stop by and introduce yourself!
How do you feel before getting an MRI done?