Patient Perspectives on Misunderstanding and Stigma in MG

Key Takeaways:

• 44 percent of patients report they have felt stigmatized or judged for having MG. One person shares, "Since I don't look sick, [people] think I'm just lazy.”
• 33 percent of MG patients feel their initial symptoms or concerns were dismissed by HCPs. One patient says, “Doctors kept telling me there was nothing wrong with me…I felt very discouraged because it seemed as if nobody, but my family, believed me."
• 36 percent of MG patients felt less alone when connecting with support groups and communities.

People living with myasthenia gravis (MG) frequently face unique challenges, particularly concerning misunderstanding and stigma. Gaining insight into these lived experiences is crucial for fostering a more empathetic and effective care environment.

Health Union’s Myasthenia Gravis In America 2024 survey gathered valuable insights into what it means to live with myasthenia gravis. Continue reading for some of those findings, as well as input from MG patients themselves.

The frustrating path to diagnosis

For many with MG, the journey to a formal diagnosis is not straightforward. Initial symptoms can be subtle, intermittent, and mimic other conditions, leading to considerable diagnostic delays.

According to the MG In America 2024 survey, 1 in 10 patients reported that it took more than 5 years to receive a formal diagnosis, and:

• Nearly half (49 percent) reported undergoing a large amount of diagnostic testing.
• Another 47 percent had to visit multiple healthcare providers (HCPs) to get a diagnosis.

Many patients feel their initial symptoms or concerns were dismissed by healthcare providers (HCPs) – 33 percent – or that they were first misdiagnosed – 32 percent.

One person shares their frustrating experience, noting, "I actually felt very relieved when I was diagnosed because it took a couple of years for me to find a diagnosis. Doctors kept telling me there was nothing wrong with me because all my neuro bloodwork and tests were normal at first, but I could barely walk or go to school. I felt very discouraged because it seemed as if nobody, but my family, believed me." 

Another patient shares, "I have often had my symptoms minimized and attributed to mental health issues, such as depression and anxiety, when I know my body and what is my normal and my abnormal. I have been shuffled from one doctor to another."

Patients are not just seeking facts; they’re seeking understanding, reassurance, and a sense of partnership in their care journey. For HCPs, recognizing and supporting this information-seeking behavior is vital, as an informed patient is an engaged patient, leading to better self-management and improved treatment outcomes.

The longer it takes for a patient to be accurately diagnosed, the greater the chance that the disease may worsen and the patient to suffer from symptoms. HCPs should maintain a high level of suspicion for MG in patients presenting with fluctuating weakness, especially in ocular (eye) or bulbar (face, throat) muscles, and refer them promptly to a neurologist specializing in neuromuscular disorders.

Living with invisible symptoms and misunderstanding

The invisible nature of MG can be a significant source of misunderstanding and stigma. MG's fluctuating symptoms mean a patient might appear healthy one day and severely debilitated the next, leading to skepticism from those unfamiliar with the disease.

Thus, people with MG may feel judged by others, which is deeply invalidating. One caregiver experienced this firsthand, bristling "in angry defense when some ignorant bystander thought [her husband] was drunk because of slurring, and wouldn't cede a chair when he was about to collapse." 

Many patients echo this sentiment, with 44 percent reporting they have felt stigmatized or judged for having MG. One person noted that, "Since I don't look sick, [people] think I'm just lazy.”

The emotional and cognitive burden of MG

The impact of MG extends far beyond physical symptoms. Cognitive fatigue, often described as "brain fog," can impair concentration, memory, and information processing, sometimes misinterpreted as a lack of engagement.

A caregiver in the Myasthenia-Gravis.com community mentions that her husband's fatigue is a constant challenge, making him focus on what he cannot do. According to the MG In America survey:

• 55 percent of patients found that their MG contributed to anxiety.
• 45 percent felt it contributed to their depression.

Urinary incontinence is another challenging symptom that can take a mental and emotional toll, as highlighted by a patient in the MG community who struggled with it. She found that medical professionals often didn't acknowledge its connection to MG and described the embarrassment and the feeling of isolation.

The power of self-advocacy and patient education

In the face of these challenges, self-advocacy and patient education are powerful tools for empowerment. Patients who understand their disease, its treatments, and potential fluctuations are better equipped to communicate their needs to HCPs and loved ones, empowering them to actively participate in their care decisions.

Many HCPs, however, may not fully understand the complexities of MG or how it uniquely affects each patient. One caregiver notes that "Even in the medical community, the knowledge level about the condition is extremely low," and she often feels she comes off as "pushy" when providing extra information to medical staff. But she knows, "without this extra information, it's my husband who suffers."

"The most important thing is to educate yourself as much as possible... You need to be your own best advocate, not only for proper medical care but also to help those around you understand your illness," advises one MG patient.

By recognizing the physical, cognitive, and emotional burdens of MG and working to dispel myths, the healthcare community can cultivate a more empathetic and effective environment, empowering individuals with MG to navigate their journey with dignity, understanding, and hope.