Finding Support for Your MG Journey
Myasthenia gravis (MG) is a challenging condition, both physically and emotionally. Any chronic autoimmune condition, like MG, presents ongoing challenges. As the disease progresses, it also creates more stress as physical limitations or disability disrupt life even more.
Having to adjust to new physical realities also means that mood disorders, like anxiety and depression, are more common in people living with myasthenia gravis. In fact, one study found that anxiety occurs in about half of people with MG, and a third have depression.1
Several studies have shown that the more severe the muscle weakness, the more severe the person’s anxiety or depression. Another study found that fatigue is actually more common and troublesome than muscle weakness. If long-term fatigue gets in the way of daily activities, quality of life suffers.1,2
There are several ways to find support and learn coping strategies that can help a person living with myasthenia gravis.
Join a support group
Many people find it helpful to join a support group to connect with others who understand the challenges of MG. Meetings are usually available both online and in-person. Some may be local, while others are regional or national. The Myasthenia Gravis Foundation of America offers both group and peer-to-peer phone support to people living in the United States. There are also several regional MG associations that provide support.3
Learn stress management techniques
People with myasthenia gravis tend to quickly learn that stress makes their symptoms worse. This is why finding ways to reduce or manage stress becomes a key part of living with MG. Some common examples of stress management and relaxation techniques include:4
Find financial support
Myasthenia gravis can damage a person’s finances if the condition gets severe during the prime wage-earning years of the 20s to 50s. And, regardless of age, co-pays, dealing with insurance, and paying for help when you need it gets expensive. Finding financial support can help relieve the anxiety of how to find money to pay for the extra expenses associated with MG. Local MG support groups, Councils on Aging, and other nonprofits are good places to start when you need financial support. Depending on which drugs you take, you may be able to find help paying for your prescriptions. Ask your doctor about drug maker assistance plans.5
Many neurology departments have social workers on staff who specialize in helping people with MG find the support they need. They often have the inside scoop on national and local support groups, assistance programs, caregiver resources, and other sources of support. They also may be able to help with filing disability, financial, and employment paperwork.
Coping with an unpredictable disease
You may need to let friends and family know about your MG diagnosis so they can help support you. They need to know about your need for extra rest or that your symptoms can be unpredictable and change from time to time. This knowledge will help them understand when you turn down an invitation or unexpectedly have to cancel plans.
Knowing about your MG will also help them remember your need to include break times during group activities or remind them to help with household chores. These are the people who will help you focus on what you can do rather than what you cannot.