Talking about MG

In the Workplace      With Friends     With Kids

Talking About MG in the Workplace

“Do you tell people you work with – your co-workers, supervisors, or even your boss – that you have myasthenia gravis?” This may be one of the toughest things people with MG grapple with. If you decide to tell your coworkers, you need to know how to approach the subject and what your legal rights are.

First off, the decision to notify your employer about your MG is YOUR decision alone. You are not legally obligated to tell them. But you are encouraged to inform your employer about MG and how it may impact your work. If they are unaware of your condition, they may assume that you are lazy, inept, or indifferent about your job responsibilities. If you chose to let your workplace know about your MG, you would be able to request reasonable accommodations to help you fulfill your job responsibilities. In the United States, this is a legal requirement under Title I of the Americans with Disabilities Act.

By sharing your diagnosis, you will help your employer understand MG and foster discussion about possible solutions to any challenges that your symptoms may present. Communicate, communicate, and communicate! Let your employer know what you need in order to do your job well. Your MG should work with your career, not against it. Be honest. If you’re getting tired, communicate that. If you can’t physically do something, let your employer know. Work with them to find solutions. The Job Accomodation Network may be able to help you and your employer understand your legal rights.

Stressful situations on the job can cause MG symptoms to worsen. Make your employer aware of this, so that they don’t misinterpret the situation as poor performance. An especially busy time or stressful situation on the job may call for some brief time off to allow you to rest and recover. Flex time is a great option that can help meet your needs and your employer’s needs. If your workplace does not have a formal flex time policy, you can suggest it. Explain that through an alternate schedule, you can optimize your performance and productivity for the employer. If the employer remains skeptical, propose a month-long trial schedule to help them assess the benefits of such an arrangement.

When someone in the workplace looks at you differently, perhaps because of eyelid ptosis or your inability to smile, use this as a teachable moment. Try to explain succinctly. You might say, “I see you’re wondering why my eyelids seem so droopy (or why I’m wearing an eye patch, etc.). I have myasthenia gravis. It’s an autoimmune disease that causes muscle weakness. This is one symptom. If you are curious, you can learn more at myasthenia.org.” The more open you are about what you're going through, the more you will find your support network at work expands.

Explaining Myasthenia Gravis to Friends

Try to explain succinctly. You might say, “Are you wondering why my eyelids seem so droopy (or why I’m wearing an eye patch, etc.)? I have myasthenia gravis. It’s an autoimmune disease that causes muscle weakness. This is one symptom. I'm happy to talk more about it if you're curious, or you can check out myasthenia.org.” Become the teacher, and share your knowledge to educate people around you.

Daniel Schwartz, an MG patient in Alpharetta, Georgia, says that he often hangs out with friends who are doing physical activities that he can’t do anymore. “I watched some friends play kickball to support a good friend who was the team captain. He told teammates that I was just going to watch because I could not run. Some people asked, and I explained it to them.”

When describing it to your friends or anyone who is unfamiliar with MG, keep it short and simple. For example, say, “My muscles and nerves don't communicate.”

Explain to your friend that if your eye is drooping, it’s because the body is not allowing the nerves to spark the eyelid muscles into action.

If you are dragging your leg or not walking well, it is because the legs haven’t gotten the message to move.

If you cannot swallow, it is because your tongue, pharynx, and esophagus do not know that is what they are supposed to be doing. 

Explain to them that a person with MG may feel like they’ve just put in the hardest workout – and they are sore! But, really, they have just woken up from a full night’s sleep.

Friends may want to know how you "got" MG - is it contageous? Is it something you did? It's important to let people know that MG isn't contageous, but that we don't know why some people get it. Like many autoimmune disorders, it's likely that a combination of genetic and environmental factors intersect to trigger MG.

When a friend finds out about your MG, they may say, "Hope you feel better soon!" Friends should know that MG is a chronic illness that you'll deal with for the rest of your life. Explain that while there are a number of treatments to manage symptoms, and some patients go into remission, there is no cure. Let them know that "How have you been feeling lately?" is a great and welcome question.

In addition to making your friends aware of MG, let them know how they can help you.

Below are various ways to get your friends involved:

• Ask for help when you need it. MG saps your energy, and friends can do so much to help you get through your tasks. If you're tired, ask a friend to bring you dinner, pick up your dry cleaning, or take your kids to school that day. Having a network you can depend on will improve your physical and mental health. For many friends, all you have to do is ask - they are happy to step up and support you. 
• Be your emergency contact. It's important for people in your life to be aware of what an MG crisis looks like and to know what to do should you need help. Let them know where your medical information is and who is treating you. Have several people you can call if you need a ride to an appointment or the hospital.
• Raise awareness. Encourage your friends to spread the word about myasthenia gravis on all social media channels, including sharing your posts during MG Awareness Month or during community fundraising campaigns. They can distribute posters, flyers, and other educational material to fire houses, libraries, doctors' offices, and so on. Ask your friends if they have connections that can help you give a talk about MG to a local community organization.
• Fundraise for MGFA. Your friends can organize community fundraisers, like walks or golf tournaments, or participate in an online fundraiser. A gift to MGFA supports critical research, patient support services, and education.

Explaining Myasthenia Gravis to Kids

Whether your diagnosis is new or old, the children in your life will be curious and maybe a little scared. Does your body hurt? Are you going to die? Can you still play with me? Will I get sick, too? 

These are all natural questions. Don't be afraid to talk openly and honestly with kids about MG. Facts are a great way to approach a conversation with a child about MG.

The age of the child will impact how much you share or in what detail. Older children and teenagers may be interested in the biological mechanism of MG - explain the way your body's immune system senses an attack, so it overproduces certain antibodies that can affect how the nerves and muscles communicate. They may appreciate resources on the myasthenia.org webpage.

For younger children, it is enough to say that you are sick with a disease that makes you feel weak and tired sometimes. You may not be able to run and play, or read books aloud, or pull apart Lego bricks the way you used to. Your eyelids might look sleepy, or you might have trouble talking. Some days you feel okay, and some days you feel sick. Either way, you're still you, and you love them!

Make sure you answer questions truthfully. You can express your emotions to children. If you feel scared sometimes, it's okay to say that. You can also share that you have great doctors taking care of you and that you have hope for future treatments to help you feel better.

Depending on the severity of your MG, you may want your children to know what an MG crisis is and what to do in case of an emergency. They may feel better knowing what to do if you need help. Feeling helpless and confused when a loved one faces an ermgency medical situation is stressful for anyone, but especially a child.

Kids are passionate champions of the people they love. Don't be afraid to involve the kids in your life in your awareness-raising and fundraising activities! They love to be involved.