At 27 years old, Julie Stamm was a young woman in the world of finance. All of the exciting young adult milestones lay ahead of her. But with a new diagnosis of multiple sclerosis, the unknown effects of a chronic, degenerative condition lay ahead of her as well.
“I remember what it was like when I was diagnosed, and I just didn’t want anyone else to feel like that,” she says.
MS typically starts during young adulthood between the ages of 20 and 50. For most young women, this time is packed with major milestones, new ventures in your career, building relationships, personal growth, and deciding if you want children.
Stamm’s diagnosis came in the middle of a career in finance. Now 42, she is the author of the children’s book Some Days: A Tale of Love, Ice Cream, and My Mom’s Chronic Illness and a patient advocate. Every day, she works to help other people who feel the way she did after diagnosis. In hindsight, she calls her post-diagnosis career change a “wonderful gift.”
“At the time, I felt like a complete failure and that everything I had worked so hard for was gone,” she says about leaving finance to navigate a new diagnosis and manage her symptoms. “Now, I am so incredibly grateful for where I am and the life I have created.”
Stamm likes to say, “Each morning can start better.” Throughout her young adulthood, she always knew she wanted to be a mom, and after a long journey, she became one 5 1/2 years ago. “If you dream of being a parent, do it,” she says. “What matters is that you love completely and do your best.”
She balances her symptoms and motherhood through empowering language and making things fun with games like “spot the potty” and “air conditioner missions.” She says, “Those are fun things to him. He doesn’t look at it like, ‘Oh, my mom needed a bathroom quickly’ or ‘she got too hot, and we had to go in.’ We made it fun and enjoyable.”
Of course, motherhood isn’t the only thing that requires a little balance as a young woman living with MS. Mary Rensel, MD, is the director of pediatric multiple sclerosis and wellness at Cleveland Clinic’s Mellen Center for Multiple Sclerosis Treatment and Research. “We have a lot of new medications to help treat MS, and the new medications are more effective over the years, which is very exciting,” she says.
Along with medication, Rensel says good nutrition, staying hydrated, sleeping, learning about emotional health, connecting with others, and squeezing in fun can all help keep you in the best possible health.
“If someone is kind of stuck, a good thing to do is to hang out with people who do the things you want to do. So hang out with somebody who exercises regularly or hang out with somebody who prioritizes a healthy diet,” she says. “Behaviors are contagious.”
As a children’s book author, Stamm has multiple ways to talk about MS with kids. But these creative conversation techniques will help anyone understand, not just kids. When it comes to energy, she likes to compare her energy supply to that of an iPad battery.
Think of an iPad that’s only charged 20% and you don’t have a charger. You’ll have to pick and choose what apps you spend your time on with that 20%. “You have to really allocate who and what you spend your energy on,” she says. With your time appropriately allocated, it’s easier to focus on each task.
For her, prioritizing her energy is also all about planning. “Nothing happens just by happening. It’s all thought out. Everything is planned,” she says. “Plan properly and do as much as you can. Nothing is ever going to go perfectly, but just knowing where your bathrooms are and knowing how far you are going to have to walk is really important.”
Advocating for yourself doesn’t always mean speaking up at a doctor’s appointment, although Stamm does encourage getting second opinions, speaking up, and making sure your doctor sees you for you. But for her, advocating for yourself also means clearly communicating your needs and boundaries with everyone around you who may not understand.
Take an offer for an after-dinner stroll as an example. If Stamm knows her legs are done for the day, she’s going to let the person who invited her on the walk know. She says it’s difficult for people to understand if you don’t give them details. “I think it is important to tell people,” she says.
Finding support through family and friends is always important, but finding a support group through a hospital or social media is also a good idea. “I think with any diagnosis, you need to find your people that are battling the same thing,” Stamm says. “You can have your family and your network, but they’re not going to understand what it’s really like on a day-to-day basis.”
She has a group of “MS sisters” who were all diagnosed around the same time, and they’re all at different young adult milestones and stages in their lives. “It’s important to find people that are battling the disease alongside you and have them to vent to, cry to, laugh with,” she says.
Rensel suggests starting with the National MS Society as a go-to resource. “The National MS Society has a great website that keeps people very well informed of the latest research and a lot of wellness tips. So that’s a wonderful resource.” She also suggests building a health care team that addresses what’s important to you.
“No one can predict where this disease will take you,” says Stamm. “You know your body, you know your limits, and if you want something in life, go for it!”