Tips for Those Newly Diagnosed with Myasthenia Gravis
It can require a long journey before you finally arrive at a diagnosis of myasthenia gravis (MG). Having a rare disease can feel overwhelming and scary. You may have never heard of MG before being diagnosed. Luckily, there are ways you can feel more confident and help yourself navigate life with MG.
Learn all you can
Knowledge is power. This is especially true when newly diagnosed with a rare disease. Take time to learn all you can about MG from trustworthy sources. The more you know, the more you can help yourself. Learn about the disease, the different types of MG, treatments, and myasthenic crisis. The more you know, the less frightened you will feel.1-4
Talk to others with MG
Finding a community to connect with for MG support can be valuable. It helps you feel less alone. Search your area or online for a support group. Here, you can connect and share stories with others. All MG journeys are unique, as all bodies are different. Yet, hearing the stories of others can feel affirming. Support groups also provide useful information about the disease and potential new treatments.1-4
Try different treatments
The first treatment you try may not be the one that is most helpful. It can take time to find the right treatment or treatment combination. Do not despair if the first one is not the best! Talk with your doctor about trying other options and combinations. Combining drugs with other therapies, like physical therapy or acupuncture, can have benefit for the management of MG.1-4
Keep medical information with you
When having a medical emergency, MG-related or not, it is important to have information about your diagnosis with you at all times. This should include basics about MG, your medicine list, and what drugs are contraindicated (should not be used) for you.
A card in your wallet, a printed sleeve to put on your seatbelt, and a loved one with this information are some options. Since MG is a rare disease, many doctors will not be well-versed in MG and treatment protocols. Having this information with you can protect you during unexpected situations.1-4
Tell family and friends
Allowing your loved ones to know about your diagnosis and how the disease affects you will give you additional support. Both MG support groups and the support of loved ones is important. You will need your family and friends to help you through the rough days.
Asking for help when you are struggling is hard. It takes practice. Loved ones are often happy to help if given specific requests. Inviting them to learn about MG and sharing information can hopefully help avoid some of the “But you look fine!” comments that can come when you live with an invisible illness like MG.1-4
Decide who else should know
If you are a student, some teachers and school staff may need to know about your diagnosis. There could be days when participating in gym class is too much. You might need help carrying a backpack. You may need to have drugs with the school nurse or office staff.
Considering an IEP or 504 education accommodation can help you manage school work and MG. If you are working, you should decide who needs to know to help you succeed in your career. Certain accommodations can be requested under the Americans with Disabilities Act (ADA) to balance the needs of work and your health.1-4
MG can be incredibly draining on your energy. Taking time to rest and nap can help conserve your energy. If you have a specific activity you know will be more taxing, try to rest up over several days prior. Also, plan for extra time to rest afterward to recover. With some planning, you can still be active and do the things that bring you joy.1-4
Have you found it difficult to discuss your diagnosis or symptoms with loved ones?