Navigating Life with Multiple Sclerosis: Barriers, Burdens, and Hope

I still remember the day I met Jane - let's call her that to respect her privacy - when she arrived at the emergency room while I was the on-call neurology resident. She was in her 20s and had lived with multiple sclerosis (MS) far longer than I had studied it. Completely wheelchair-bound, she relied entirely on her husband and family for daily care despite her young age. Her doctors had tried to provide the necessary care through disease-modifying therapies (DMTs), physical therapy, and home health services, but she faced numerous barriers that prevented her from obtaining treatment and care she desperately needed, which contributed to her extensive disability.

Jane’s experience, unfortunately, is not unique. Many people living with MS encounter significant systemic challenges in accessing healthcare, securing assistance, and obtaining tools to improve their daily lives.

Healthcare Access and Coordination

Many individuals are diagnosed with MS after experiencing their first neurological symptoms, which require evaluation by a neurologist. This process involves imaging, blood tests, and sometimes spinal fluid analysis to rule out other neurological conditions. While diagnosis can often be made within a few weeks, the significant shortage of neurologists—especially MS specialists—in the U.S., particularly in rural areas, leads to delays. This delay in diagnosis leads to delays in treatment that can eventually result in permanent neurological symptoms and disability.

Unfortunately, the challenges do not end with diagnosis. The high cost of DMTs, insurance coverage limitations, and bureaucratic hurdles—such as prior authorizations, medication denials, and formulary restrictions—often delay treatment initiation, increasing the risk of permanent neurological damage.

Additionally, limited access to rehabilitation services and mobility devices, many of which are not covered by insurance, further widens gaps in care.

Financial Burden

MS is most commonly diagnosed between the ages of 20 and 40—critical years for higher education, career growth, and financial stability. Research shows that even before an official diagnosis, silent symptoms of MS can reduce productivity and income. The financial burden grows as healthcare costs increase, including expenses for treatment and annual MRIs, often requiring significant out-of-pocket payments due to high-deductible insurance plans.

For those unable to work due to the disease, securing long-term income and benefits, including health insurance, can be extremely challenging. Limited disability benefits and frequent denials of Social Security Disability Insurance (SSDI) add to the struggle.

Additionally for those that remain in workforce, workplace accommodations, such as flexible schedules or remote work, are not always available. Moreover, living with a progressive disease during one’s prime working years can hinder career advancement, limit earning potential, and disrupt financial stability— making it difficult to maintain a steady income to cover future medical and life expenses during retirement years.

Mobility and Transportation Barriers

Many MS patients require transportation for doctor appointments, MRIs, infusions, and physical therapy. However, limited public transportation infrastructure forces them to rely on caregivers.

For those dependent on wheelchairs and scooters, accessibility challenges are even greater due to the high cost of adaptive vehicles and the lack of wheelchair-accessible options in common rideshare services. These barriers not only limit access to medical care but also restrict social interactions and overall quality of life.

Lifestyle Challenges

Many daily MS symptoms can possibly be alleviated through lifestyle modifications, such as:

• regular exercise,
• dietary adjustments,
• balanced mental health, and
• active lifestyle routine.

However, financial constraints, transportation limitations, and the high cost of wellness activities often make these lifestyle changes difficult to implement. The inability to maintain a healthy lifestyle can lead to additional comorbidities, including cardiovascular and metabolic diseases, further complicating overall health outcomes.

Psychosocial and Mental Health Issues

Depression is one of the most common symptoms of MS. Living with a chronic illness often leads to social isolation, particularly for young individuals in what should be their healthiest years.

Many MS patients struggle to maintain personal relationships, and invisible symptoms such as fatigue, cognitive impairment, and depression add to the challenge.

Well-meaning but dismissive comments like, "But you look so good," can make it even harder for individuals to receive the support they need and feel understood by those around them.

Unfortunately for Jane, the system failed her at a very young age, despite the efforts of those who tried to help. I still remember her words—that in the end, she was grateful she was the one with this disease rather than her son.

Jane may not remember me—the doctor who cared for her one night during her hospitalization years ago. But what she doesn’t know is that on that very night, I decided to dedicate my future career to treating people living with MS, striving to reduce the challenges and barriers they face—so that I can contribute in a future where fewer individuals have to endure what she did.

This article was originally featured in the 2025 Spring Edition of the Multiple Sclerosis Foundation’s Focus Magazine.