Myasthenia gravis (MG) can develop at any age, but it’s more common in women in their 20s and 30s, as well as in men ages 50 and older, according to Johns Hopkins Medicine. For younger people, living with myasthenia gravis presents difficulties that can affect education, career, relationships, and mental health, making it hard to live a normal life. In this article, we’ll explore seven specific challenges that younger people with myasthenia gravis face and offer tips on how to manage them.

1. Difficulties During Education

Education can lay the foundation for future opportunities. However, myasthenia gravis can make studying hard because the disease causes fatigue, muscle weakness, and ocular (eye) symptoms such as double vision and drooping eyelids. The side effects of MG therapies may also lead to cognitive (thinking and memory) issues, further complicating learning and working.

Some students with myasthenia gravis may need to modify their college plans. They might have to reduce their course load, take a break from school during flares, or ask for accommodations such as more time to take tests. Changes like these can be frustrating, and some students may feel like they’re falling behind their peers. Living with myasthenia gravis may require some flexibility for meeting goals and maintaining long-term health.

2. Career Challenges and Adjustments

A young adult with myasthenia gravis also may have to rethink their career path because of treatments, medical procedures, and symptom flare-ups. Jobs that require physical activity, long hours, or high stress may no longer be great options. Potential treatment side effects, such as diarrhea and twitching muscles, may also pose challenges in the workplace.

Some young people with myasthenia gravis may find that they need to switch career paths, delay their progress, or choose a different type of work. This can be disappointing, especially after investing time and effort in a particular career. However, it’s important to adapt career goals to align with the realities of living with myasthenia gravis and sticking to a treatment plan. In addition to medications, treatment might include infusions or procedures such as:

• Intravenous immunoglobulin (IVIG)
• Plasmapheresis (plasma exchange)
• Thymectomy (surgical removal of the thymus gland)

By working with your MG specialist, you can find treatment options that will help you manage symptoms and pursue the right career for you.

3. An Invisible Disability

One of the toughest aspects of living with myasthenia gravis is that it can be an “invisible” disability. You may look fine on the outside but experience MG symptoms that other people can’t see. This can make it hard for others to understand what they are going through.

Friends, teachers, or coworkers might not realize how these symptoms affect you and may expect you to keep up with everyone else. This can lead to misunderstandings and feelings of isolation. It’s important to communicate your needs clearly and seek support from those who understand your condition.

4. Family Planning and Parenthood

Family planning can be a complex issue for people with myasthenia gravis. The condition can affect pregnancy and childbirth, leading to complications such as preterm delivery or a difficult delivery — for example, the muscles needed for pushing may be affected. Myasthenia gravis can also be passed to a child, causing an infant form of the disease in around 12 percent to 40 percent of babies. Also, some immunosuppressive drugs (medications that suppress the immune system) may not be safe to take during pregnancy.

In some people, problems with the thymus gland, which plays a role in the immune system, can make MG symptoms worse. If thymus issues are complicating your condition, your doctor may recommend you undergo a thymectomy to help manage symptoms instead of taking medications. People with myasthenia gravis who want to have children should work closely with their neurology team and other health care providers to plan the safest approach.

Between MG symptoms and treatment and the demands of parenting, some people with myasthenia gravis decide not to have children. If you do plan to have a family, it’s possible to have a healthy pregnancy with myasthenia gravis. Your doctor can help you find a way to manage symptoms during pregnancy and parenthood.

5. Social Life and Relationships

Myasthenia gravis can take a toll on social life and relationships, especially for people who have difficulty talking to others about their condition. Even if you’re open about having myasthenia gravis, it’s a rare disease that’s unfamiliar to many people.

Younger people are often in a stage of life in which they’re building friendships, dating, and socializing. MG-related fatigue and muscle weakness can make it hard to keep up with social activities, leading to loneliness or frustration — especially when friends don’t understand why you have to cancel plans or leave an event early. It's important to not only prioritize your health but also find ways to stay connected with friends and loved ones. That might mean opting for less physically demanding activities or engaging in more online communication.

6. Financial Concerns

Living with a chronic illness like myasthenia gravis can be expensive. The cost of MG procedures and treatments can add up. Blood tests, electromyography (EMG, a test that checks muscle and nerve health), and other procedures are often a necessary expense to properly diagnose and monitor the condition and its progression.

“I read of many people going for years without a diagnosis, going to several specialists, and incurring many costs before knowing what’s been causing their health issues,” an MGteam member shared.

The cost of health care for myasthenia gravis makes it crucial to explore resources that can help cover MG medical expenses. You can look into sources of financial assistance, such as programs offered by these nonprofits:

• The Assistance Fund
• The National Organization for Rare Disorders
• The PAN Foundation

7. Mental Health and Emotional Well-Being

Living with myasthenia gravis can take a toll on mental health. The challenges of managing a chronic autoimmune disease, especially at a young age, can lead to anxiety, depression, or frustration. The condition’s unpredictability, combined with limitations caused by MG symptoms and treatments, can make it difficult to stay positive at times.

One MGteam member described their feelings as similar to post-traumatic stress disorder (PTSD). “I’ve been feeling pretty good, but I have anxiety sometimes that makes it hard to determine if I’m entering a myasthenic crisis or if my anxiety is just causing my chest to feel tight,” they shared. “Between my PTSD fear of not being able to breathe and the anxiety, a guy can’t catch a break.”

If you have myasthenia gravis, you don’t have to navigate your condition alone. The condition’s impact on mental health can be significant, so it’s important to seek support when you need it for your overall well-being and quality of life. For some people, seeing a professional counselor or psychotherapist can be helpful for managing the emotional challenges of myasthenia gravis.

Support groups dedicated to people with myasthenia gravis, either in person or online, can help you meet others who understand what it’s like living with this disease. One member of MGteam welcomed another who’d just joined, saying: “Reading others’ comments and life happenings helps me tremendously. I often don’t know what questions to ask, but when I do, I know my friends here will help and understand.”

Talk With Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. On MGteam, members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Are you under 40 and living with myasthenia gravis? How has this condition complicated your life? Share your experience in the comments below, or start a conversation by posting on your Activities page.