What MS patients want you to know

What MS patients want you to know

Living with Multiple Sclerosis: Myths, Realities, and Insights

Image: An individual with Multiple Sclerosis (MS) using a mobility aid to navigate their surroundings.

Living with a complex and unpredictable condition like Multiple Sclerosis (MS) can be challenging. Misconceptions often cloud people’s understanding of this autoimmune disease, leading to misunderstandings and a lack of empathy. In this article, we will explore the realities of living with MS, debunk myths, and provide valuable insights from individuals who have firsthand experience with the condition.

The Myths and Realities of MS

One common myth about MS is that it predominantly affects older individuals and leads to complete disability and confinement to a wheelchair. This couldn’t be further from the truth. MS usually begins between the ages of 20 and 40, and its progression varies from person to person. Symptoms can range from mild to severe, with intermittent flare-ups or persistent periods of distress. Some symptoms may be visible, while others remain hidden, making it challenging for those around individuals with MS to fully comprehend their experiences.

Daana Townsend, a 40-year-old educator from Milwaukee, WI, aptly highlights the unpredictability of MS: “MS is a very unpredictable disease. It can change from minute to minute. One minute you’re feeling great, and then 5 minutes later, you’re too fatigued to even get up and go to the bathroom.” Despite substantial research, the exact cause and exacerbating factors of MS remain largely unknown. While there is no cure, treatments exist to slow the progression of the disease for some individuals.

The Multifaceted Nature of MS

MS affects each person differently due to its impact on the body’s central nervous system. The autoimmune response disrupts communication between the brain, spine, and the rest of the body, resulting in various symptoms such as numbness, tingling, balance problems, dizziness, vision issues, fatigue, and even sexual, bladder, and bowel dysfunctions. Individuals may experience distinct symptoms based on the type of MS they have.

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Jenna Green, a 36-year-old MS advocate from Boston, shares her diagnostic journey and experience with relapsing-remitting MS, the most common form of the disease. “I was lucky to be diagnosed rather quickly after my first flare-up. An MRI confirmed MS,” she says. Relapsing-remitting MS is characterized by periods of flare-ups that can last from a few days to weeks, followed by intervals with mild or no symptoms.

Garvis Leak, a retired Air Force professional from Dayton, OH, narrates his own diagnosis, revealing a less common form of MS: primary progressive MS. After experiencing back problems years after retiring, a neurosurgeon discovered lesions on his spine and neck, ultimately confirming his diagnosis. Primary progressive MS leads to a steady worsening of symptoms over time. For Leak, an active individual, the diagnosis felt like a devastating blow.

A Grief-like Journey

Green describes the emotional impact of receiving an MS diagnosis as akin to grieving. At 31 years old, she had been in the prime of her health and life, making the diagnosis all the more jarring. It took her a significant amount of time to share the news with people beyond her immediate family. “It was perplexing…a lot of grief. You don’t realize it at the time,” she reflects. Seeking therapy, Green learned that grieving was a natural part of the process, eventually accepting that her life had taken an unexpected turn.

The Invisible Battle

Invisible symptoms pose a significant challenge for individuals with MS. Dawn Morgan, a 45-year-old teacher from Washington, DC, diagnosed nearly 20 years ago, highlights the disconnect between appearances and internal struggles. “I have gone through periods of not feeling so well internally. But on the outside, I may seem fine. They say, ‘Oh, you look so good,’” Morgan explains. This disconnect can lead to misunderstandings, with friends and family not fully comprehending the experiences of their loved ones with MS.

Green emphasizes the importance of understanding and validation, stating, “Don’t make someone with MS feel like they have to justify their disease to you.” The impact of MS fatigue cannot be overstated. Fatigue is a prevalent symptom, affecting approximately 80% of individuals with MS. Its causes remain unclear, but it can significantly disrupt daily routines.

Navigating Relationships with Empathy and Open Communication

MS not only affects individuals but also has a substantial impact on their relationships with friends, family, and partners. Green explains the challenges faced by partners who struggle to understand what their loved ones are going through. “They’re not feeling what you’re feeling, and they want to support you, but there’s no handbook for this,” she remarks. Individuals with MS may also feel like burdens to those around them, even if unintended.

Open and honest communication with loved ones becomes paramount. Townsend stresses the importance of assuring individuals with MS that they are seen and not burdens, stating, “Reassure me that you see me.” Leak advises maintaining clear lines of communication with family members during the diagnosis and beyond, as their support becomes crucial during difficult days.

Accommodations in the Workplace

The impact of MS extends to the professional realm. Morgan recounts her experience as a college professor, where the demands became overwhelming. Lack of understanding from her colleagues and superiors regarding the need for accommodations, such as dealing with bladder and bowel issues, resulted in uncomfortable situations during her work hours. To address these challenges, Morgan moved to working remotely, finding it better suited to her unpredictable MS symptoms.

Under the Americans with Disabilities Act, reasonable workplace accommodations for individuals with MS are protected by law. Collaborating with supervisors and Human Resources is crucial in ensuring a supportive work environment.

Pre-planning for Social Events

For individuals with MS, participating in social events may require significant pre-planning and consideration. Some individuals may experience long periods without symptoms, while others with more severe MS symptoms would require special accommodations. Accessibility becomes a key factor. Townsend highlights the need for consciousness and consideration regarding physical limitations in venues, such as the availability of elevators instead of stairs.

Embracing Mobility Aids

Balance and movement issues are common in MS, making mobility aids a vital tool for individuals to maintain their independence and navigate their surroundings safely. However, there can be reluctance and societal stigma surrounding their use.

Green advocates for embracing mobility aids without shame, emphasizing that they are designed to enhance quality of life. Morgan echoes this sentiment, stating, “We have to also normalize the use of mobility aids and quiet the judgmental stares.”

Embracing Life, One Day at a Time

While the uncertainties of MS can be overwhelming, finding comfort and solace in the MS community can make a significant difference. Morgan expresses gratitude for the connections she has formed with others facing similar challenges. “I love feeling connected to other people that I can pick up the phone or a text or go on social media and say, ‘Hey, I’m just not feeling well,’” she shares.

Despite the hardships, individuals like Leak approach life positively. “This is something that I have, but it is not something that will control me,” he asserts. MS may pose its difficulties, but with the support of loved ones and a positive mindset, individuals can navigate its challenges and continue to live fulfilling lives.

Living with MS requires empathy, understanding, and a willingness to break down misconceptions. By shedding light on the realities of this condition, we can build a more inclusive and compassionate society for those affected by MS.