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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, they may be able to provide a “reasonable accommodation” to help you fulfill your job responsibilities.

 

Effective communication in any job is essential to maintain a good employer/employee relationship. Your information will help the employer gain a broader understanding of 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.

 

Stressful situations on the job will often 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 MG. It’s an autoimmune disease that causes muscle weakness. This is one symptom. If you are curious, you can learn more at myasthenia.org.” Become the teacher, and share your knowledge to educate people around you.

 

Explaining Myasthenia Gravis to Friends

Try to explain succinctly. You might say, “I see you are wondering why my eyelids seem so droopy (or why I’m wearing an eye patch, etc.). I have MG.  It’s an autoimmune disease that causes muscle weakness. This is one symptom. If you are curious you can learn more, 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. If you make it too long, people will react the same way as if hearing a lecture on rocket science. It’s natural to tune someone out when you get confused. They are not ignoring you, they are just trying to understand and keep up. Make it simple. For example, say, “My muscles and nerves do not communicate”.

 

Explain to your friends that it’s a neuromuscular autoimmune disease. It involves the nerves, muscles and the body attacking itself with its own antibodies. But what does that mean, and more importantly, how do you explain it? 

 

With MG, the body creates antibodies that attack portions of the nerves that are supposed to be delivering messages from the brain to the muscles. The brain is the command center and the nerves are its delivery drivers.

 

When the delivery drivers get to their destination (the eyes, the legs, the lungs, the throat, etc.) – there is a rogue night watchman (the antibody) who will not let the delivery driver deliver his message. So the message never gets delivered.

 

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

 

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.

 

No one knows why some people have MG, and each patient’s symptoms can be quite different from anyone else’s. That is why MG is often called a snowflake disease, because everyone’s experience with MG is unique.

 

In addition to making your friends aware of MG, also let them know how they can help you, and if they are your friends, they are going to want to know how they can help their friend in need.

 

Below are various ways to get your friends involved:

  • Engage in social media. Encourage your friends to spread the word about Myasthenia Gravis on all social media channels, including Facebook, Twitter, Instagram, Snapchat, etc. Let them know that the popular hashtags, including #MGStrong, #IhaveheardofMG, etc., are often used by patients, caregivers, family members, friends and medical professionals to create awareness of MG. There are various ways for them to add these hashtags to their profile pictures on the social media channels, and it’s often most influential and effective during June Awareness Month for MG.
  • Participate in/support an MG Walk. The MG Walk Campaign, having raised more than $5 million in its first seven years, is dedicated to creating awareness, renewing hope and generating a vast network of community and support, all while raising important funds for the MGFA. Taking place annually in more than 30 cities nationwide, the MG Walk puts the power directly into the hands of MG patients, and allows everyone battling this illness to become the driving force behind funding for MG research, and ultimately, in finding a cure. In addition to fundraising, the MG Walk also allows patients with MG to open up and discuss their journey in a safe and nurturing environment, many for the first time, while experiencing an overwhelming sense of community from their loved ones and fellow MG patients. Your friends can participate in the Walk with you, fundraise, and spread the word. Walks take place every year from March-December, so there are plenty of opportunities to participate in the MGFA’s annual fundraiser.
  • Distribute posters, flyers and educational materials. Your friends can go around the neighborhood and bring any printouts from the MGFA website, such as posters, or informational graphics, to libraries, grocery stores, neurologists’ offices, pharmacies, etc., and ask them to display these informational handouts.

 

Explaining Myasthenia Gravis to Kids

A lot of people cannot pronounce myasthenia gravis (MG), but even more people don’t really know what it is. A doctor will tell you it’s a neuromuscular autoimmune disease. But what does that mean?

 

The word neuromuscular is a fancy way of saying your muscles do what your brain tells them to do. The brain uses nerves to deliver directions to the muscles. But, sometimes, the muscles do not get the message. That is where the autoimmune part comes in.

 

An autoimmune disease is when your body decides it does not like something that is supposed to be there, so it attacks it.

 

In the case of MG, the patient’s body does not like a part of the nerve that is delivering directions to the muscles. So the patient’s body produces antibodies – another big word – that attack certain parts of the nerve’s delivery system. Normally, the body produces antibodies to attack things like bacteria and germs to keep them from doing whatever it is bacteria and germs set out to do. But in the MG patient’s body, the antibodies keep the nerves from delivering their directions. So the muscles do not get the message and do not do what they are supposed to do.

 

For example, if the brain is sending an MG patient’s eyelids instructions to stay open, but the antibodies keep the eyelids from getting those directions, the eyelids may want to close or try to shut themselves. This makes the eyes (or sometimes only one eye) look droopy and tired. Another example is if antibodies keep an MG patient’s legs from receiving their directions, an MG patient may find it difficult to walk.

 

MG can affect the whole body or only certain parts of the body.

 

A person with MG may feel tired a lot, or they may feel like they’ve played hard all day long and their muscles hurt, but really they have only just woken up from a full night’s sleep.

 

No one knows why some people have MG, and each patient’s symptoms can be quite different from anyone else’s. That is why MG is often called a snowflake disease, because each person’s life with MG may be very different from the next person’s.

 

But with patience and treatment, people with MG can often live a full and happy life.

A World Without MG