Life with MS

By MSF Staff

There is no best time in life to learn you have MS.  Whether you are a child, young adult, mid-lifer, or senior citizen, MS will bring challenges unique to your phase of living. 

But when a MS diagnosis is delivered in the prime of life, as is most often the case, the disease alters the course of events at a time when relationships, parenting, and careers are already placing large demands on energy and attention. 

Research has shown that MS is most commonly diagnosed between the ages of 20 to 40. As scientists learn more about the epidemiology of the disease, the reason for this may emerge. For now, neurologists and healthcare workers focus on helping young and mid-life adults with MS keep their busy lives on track.

Angela Bates, M.D., a neurologist at the University of Texas Southwestern Medical Center in Dallas, delivers a MS diagnosis to her patients with the caution that learning to navigate life with MS takes time. She speaks from personal experience.

“One of the most challenging things about adjusting to MS is it’s a process.  I’ve known for four years I have MS and I am still learning how it impacts my life,” she says.

After the diagnosis

Become an MS expert, recommends Yvette Rojas. She is the executive director of the Louisville Comprehensive Care MS Center in Kentucky, and at age 47 has been living with MS for more than 20 years. Her diagnosis came when she was a young mother pursuing a career in law.

“The more you know, the less you fear. Your imagination can take you worse places than the reality,” she says. 

Find reliable sources of information, such as the MSFoucs, the National Multiple Sclerosis Society, and your closest MS Center – all of which have educational materials about MS.

When Karla Margeson was diagnosed with MS three years ago as she prepared to graduate from college, she hit the books, dispelling her initial fears by researching the issues that troubled her.

After learning about health insurance, disability issues, and how to take charge of her healthcare, she began sharing the information with others by writing articles and giving presentations for MS organizations. 

 “I wanted to make it easier for others whenever I could,” says Margeson, now a 25-year-old writer in Seattle.

In addition to learning about MS, the most important action the newly-diagnosed can take is to choose and adhere to a disease-modifying drug, says Dr. Bates. 

Tuning into the good aspects of your life is also crucial. Weeding out less important activities and distractions keeps energy reserved for the necessities. By simplifying life and shifting priorities, things that bring joy will rise to the top, sometimes creating new perspectives.

“In the minutia of the daily grind, that is what matters. MS makes you focus on what makes you happy – and it’s not a bad thing,” Dr. Bates says.

The power of positive thinking

Even before he was diagnosed with MS four years ago, Jude Hubber embraced positive thinking. So when he learned he had MS, Hubber focused on the up-side – at least he finally knew what was wrong.

As a MSFocus ambassador from Portland, Ore., Hubber’s mission is to send a hopeful message to other young adults recently diagnosed with MS.

“Be patient. You will discover you have abilities you never knew you possessed, and your life will get better,” says Hubber, now 28.

When MS struck, Hubber had embarked on the all-American journey. A college graduate with a promising job in the hospitality industry, he intended to climb the corporate ladder and marry his fiancé of three months, Felicia.

Though his employer allowed him to adjust his work schedule as needed, Hubber transitioned to a job with a national relay race organization and began to focus less on himself and more on helping other people.

He regrets that Felicia, now his wife, did not receive as much support as he did after the diagnosis: “Everyone kept calling, saying ‘How’s Jude, how’s Jude?’ No one called and said, ‘How’s Felicia?’”

As she discusses MS after a diagnosis, Dr. Bates encourages her patients to communicate openly with friends and family, because MS impacts everyone around them.

Build a support network

Not everyone you know will acknowledge the changes that MS brings to a busy lifestyle. Margeson has many acquaintances, but only a few close friendships with other young adults who can understand how MS complicates life. 

In relationships she discloses her MS cautiously but is honest about her limitations. She is too tired to socialize very much.

“I tell people, ‘I am the oldest 25 year old you’ll ever meet,’” she says.

Rojas tells the young adults with MS who seek her advice that, generally, full disclosure with friends and family over time is the best choice: “If you don’t disclose it, then you have to lie. And then it becomes toxic.”

If they don’t accept that your life must change because of MS, she suggests moving on.

A good support team is essential to coping with life’s many demands. For the parent with MS, other parents may assist with occasional childcare and transportation. An occupational therapist can offer advice on energy management and lifestyle adaptations, while a career counselor can assess job suitability and help make the most of working hours. Support groups supply an understanding that only others with MS can deliver.

“MS definitely can be managed, but it does take a village,” Rojas says.

When Dr. Bates realized her life was consumed by only work and sleep, a career coach helped her increase time efficiency at work. Even so, when the hot summer arrived, she cut back on her work hours.  She was content with her choice.

“I allow myself grace,” she says.

Hitting a moving target

Setting goals is an advisable but often frustrating task when living with MS in the prime of life.  Fear of failure keeps many from setting the bar too high, especially when MS exacerbations can come without notice. 

Hubber continues to set daily goals but will readily revise them if needed.

“Every day I set a goal to laugh, but if I lose the ability to laugh, then I set a goal just to talk,” he says.

Margeson, too, takes life one day at a time, focusing on her job as a writer as she balances extracurricular activities with fluctuating energy.

Though the prime-of-life milestones such as getting married, having children and advancing in a career are all within her reach, she has no long-term plan for achieving them.

“Those things will come when they are supposed to,” she says.

With two decades of life with MS behind her, Rojas concludes that the people who are most well-adjusted to living with MS in the prime of life and beyond are those who can adapt to the unpredictability of their disease.

That does not mean “giving in” to MS, but rather maneuvering around obstacles as they arise, creatively seeking solutions, and being open to new ways of thinking.

“You have to be a chameleon and learn to change with every turn.  Be kind to yourself, and realize that in tragedy, you can find beauty,” she says.