Living with Myasthenia Gravis
Living with a chronic condition like myasthenia gravis (MG) means living with uncertainty. Your energy levels and muscle strength may change daily, or they may not. Plus, it will take some time to figure out the mix of coping skills and strategies that are most helpful for you. You also will have to learn to ask for help when you need it.
Here are a few suggestions for how others live successfully with MG so they can still work, go to school, and enjoy their favorite activities.
Explaining an unpredictable disease
Talking with friends and family about what it is like to live myasthenia gravis will help them support you. They need to know about your need for extra rest and that your weakness can be unpredictable or change over time. This knowledge will help them understand if you have to cancel plans at the last minute or ask for rest times so you can join in group activities.1
Self-care and myasthenia gravis
If you have myasthenia gravis, there are several self-care steps you can take to reduce the chances that your lifestyle will aggravate your symptoms. A few common suggestions include:1,2
- Get enough rest at night and build in daily naps or quiet time
- Reduce stress
- Take your medicines as prescribed
- Invest in tools and devices that save you effort
- Exercise regularly, but not too much
- Stay cool, if heat triggers flares
- Eat as healthy a diet as possible to give yourself more energy
- Always tell your neurologist if you start taking a new drug or supplement
It is equally important to take an active role in your treatment by working with your neurologist and other healthcare team members. They can make suggestions that help give you a sense of control and support you as you live life to the fullest.
Working with myasthenia gravis
Many people with myasthenia gravis work, sometimes for years, especially if their workplace and responsibilities can be adjusted to accommodate their physical abilities. However, you do not have to tell your employer that you have MG. It can be helpful for them to know, but it is your choice to share this information.
For example, if your eyelid droops, you can use it as a teachable moment to explain how MG is an autoimmune disease. Other people find that they need a more flexible schedule, more frequent breaks, or the option to work from home.
Your doctor may suggest that you work with a vocational rehabilitation counselor on any job adaptations you need. These counselors are a special type of job coach for people with disabilities. They can help you decide if workplace accommodations will help you stay on the job longer, whether you need to change jobs, work part-time, or leave the workforce.3
Driving with myasthenia gravis
When first diagnosed with MG, many people worry that they will not be able to drive again. People with MG should not drive when tired and should immediately park if their vision blurs or eyelid begins to droop. People with MG may be legally required to let their state motor vehicle department and insurance company know about their diagnosis. This varies from state to state and country to country.4
Coping with finances and myasthenia gravis
Myasthenia gravis can be especially damaging to a person’s finances if it becomes hard to work. The main symptoms of MG such as fatigue, muscle weakness, and time lost to doctor’s visits can make work-life balance difficult for many people and impossible for some. Finding financial support can help relieve the anxiety of how to pay for the extra medical expenses that come with MG. The Myasthenia Gravis Foundation of America offers many suggestions for groups that can help.5
Sharing our experiences can help us all feel less alone while navigating life with a chronic condition such as myasthenia gravis. Read our patient interviews from two advocates living with MG: