By Ericka Greene, MD, director of the Neuromuscular Clinic at Houston Methodist Hospital, as told to Kara Mayer Robinson
Many things can impact life with myasthenia gravis (MG). Everyone’s experience is unique, but here are some things that may affect yours.
Health Disparities
As with many medical conditions, health care disparities, also called social determinants of health, can affect your quality of care. Things like socioeconomic status, gender, immigration status, ethnic background, and even ZIP code may play a role in the care you receive.
For example, insurance issues and financial struggles may make it harder to get a diagnosis, treatment, or emergency care. Cultural differences and language barriers can create a communication gap between you and your doctor. If you’re a woman, your doctor may attribute your MG symptoms to stress, anxiety, and depression.
Health disparities may delay a proper diagnosis and much-needed treatment. Some people with MG go months or even years without a confirmed diagnosis because of these issues. This increases your risk of complications, which can result in long-term disability and even risk of death.
Even with a proper diagnosis, it may be a challenge to find care in your community with a provider who’s knowledgeable, affordable, accessible, and willing to address the issues that cause disparity.
To improve your access to care, it’s important to build up your health literacy. This means learning about MG, your health, and the health care system. Talk to your doctor about MG and how to get the best care. You can get more information from centers that specialize in MG, like the Myasthenia Gravis Foundation of America, at myasthenia.org.
You can also find resources in your community. You may find charity clinics that offer free or discounted care. Many hospitals and care centers have translation services for people whose primary language isn’t English. Patient assistance programs sponsored by pharmacy companies may provide medication if you’re financially eligible.
Quality of Life
In recent years, experts have started to focus more on how MG affects quality of life. When researchers study new therapies, they also look at how they affect your daily activities.
MG symptoms often affect your quality of life. For example, fatigue may make grooming more challenging, which may limit your ability to get ready for work, complete errands, and travel to family outings. Doctor visits and treatments may make it harder to plan for vacations or important events in your life. It may be challenging to keep up with cleaning, meal preparation, social outings, children’s events, and earning a living.
This can be even harder if your family and friends don’t understand the impact of MG, especially if it varies from day to day or moment to moment. You may seem healthy to your loved ones, but the reality is often different.
Quality-of-life issues may lead to depression, isolation, and anxiety, which may worsen your fatigue and daily function. It may be difficult for you and your doctor to separate which symptoms are primarily due to MG and what’s contributing to or worsened by MG.
If you’re struggling with daily activities, it’s important to talk to your doctor and family. You can also find support at the Myasthenia Gravis Foundation of America and in local MG support groups, which provide a safe community to share your experiences, exchange ideas, and learn about new treatments and resources. A professional counselor can also help you and your family with your physical and mental health.
Stigma of Myasthenia Gravis
You may experience a stigma attached to MG in the health care system and in your personal life.
MG is a relatively uncommon condition, compared to other conditions, so people with MG often find themselves in a variety of clinical settings, like clinics, urgent care, emergency rooms, or hospitals, with health care providers who are unfamiliar with the disease and how to evaluate or manage it.
Even within the field of neurology, some neurologists don’t feel comfortable treating people who need more than one or two therapies. In this type of environment, your concerns or symptoms may be dismissed by doctors. This stigma makes it harder to take part in your care and advocate for yourself. At worst, it can lead to more health complications.
In your personal life, the stigma may be related to how you’re perceived by your family and community and how you view yourself. If your family or friends aren’t informed about MG disease and how it impacts you, it can lead to a lack of support.
You may feel guilty for not being able to perform or engage the way you or others expect, especially if you look like you’re healthy and others don’t know you have MG.
A prime example is if you need handicap parking because of limited walking. If you don’t have a walker, cane, or wheelchair, you may get disapproving looks or negative remarks from strangers who think your status is fraudulent. Similarly, if you need to apply for disability due to MG limitations, it may take resources and time to get disability status from a system that silently communicates that you should be able to work, even if your doctor provides records to support it.
These tips may help you manage stigma:
- Get emotional support.
- Talk to other patients with MG.
- Learn about your rights as a patient in settings like work, school, and society.
Gender Issues
MG affects women in different ways.
The condition is sensitive to hormonal changes, which may lead to changes or worsening with menses, pregnancy, and menopause.
If you’re pregnant, your MG may get worse during the early part of pregnancy, during delivery, and after delivery. You may not be able to use certain treatments that stabilize MG while you’re pregnant.
Symptoms like facial weakness, lid drooping, and voice changes may affect your self-esteem. Side effects of treatment, like weight gain and thin, easily-bruised skin, may also impact how you feel about yourself.
Women often face gender-related issues in the health care system that affect access to care and outcomes. It’s important to establish care with a neurologist who’s familiar with MG and its management. Your doctor should talk with you about your needs, expectations, desires, and how to address the issues specific to being a woman with MG.
Access to New Treatments
The landscape for treating MG is promising. In the past few years, several new and effective treatments have been approved for MG. These targeted therapies have fewer side effects and may lead to better daily function and quality of life.
The challenge that remains is the ability to access these treatments. These new treatments have high costs that may be an issue for many people, including people who are uninsured or marginalized, as well as people who have good access to care.
The hope is that as newer therapies are approved and options for care expand, resources for assistance will expand and the market will adjust so it’s available to all eligible patients.
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