What to Expect When You’re Diagnosed With Myasthenia Gravis
Key takeaways:
Bridget Noujaim has been living with myasthenia gravis for 27 years and works in peer-to-peer support for the newly diagnosed.
Myasthenia gravis is a neuromuscular disease, and the symptoms vary in length and severity.
A myasthenia gravis diagnosis can be scary, but with the right doctors and support, people who are diagnosed can go on to lead long, fulfilling lives.
In 1996, Bridget Noujaim was a 20-year-old junior at Iona University in New York. A senior editor at the award-winning school newspaper, Bridget was also in the honors program, worked as a student ambassador, and was involved in the drama club.
“It was a busy and wonderful life,” she says, with an emphasis on busy. So, it wasn’t alarming to her when she began to feel tired all the time. It wasn’t until she collapsed on stage one evening at play practice that she knew something was wrong, and her friends urged her to see a doctor.
“Everybody was like, ‘We’re all exhausted, but nobody else is collapsing on stage,’” she says, and that was the wake-up call she needed.
By the time she got to the hospital, Bridget couldn’t open her eyes — a telltale sign of myasthenia gravis, a rare disease Bridget had never even heard of before.
“For many people, it takes a long time [to get diagnosed],” she says. “It mimics quite a few other diseases.”
But in a great stroke of luck, the doctor in the emergency room knew immediately what was afflicting Bridget and called in a neuromuscular specialist to confirm her diagnosis — one that would change her life in an instant.
What is myasthenia gravis?
Myasthenia gravis is a chronic autoimmune disorder that affects the muscles, leading to varying degrees of weakness throughout the body. It most often affects the eyes, neck, and jaw first, causing drooping eyelids, difficulty chewing and swallowing, and trouble holding the head upright. It may then spread into the limbs and sometimes the respiratory system.
“The easy definition of myasthenia is that the transmitters in my brain do not transfer the signals to the nerves and the muscles in my body,” Bridget says. “So, my eyes don’t know that they’re supposed to stay open during the day and close at night when I go to bed. My legs don’t know that I’m supposed to be able to get in and out of a car. My lungs don’t know that they’re supposed to be able to breathe.”
While those symptoms are challenging, they’re not necessarily constant. Another hallmark of the condition is that the symptoms come and go, sometimes with frequency. And they vary from mild to severe. So, someone with myasthenia gravis can’t predict how they will feel on any given day.
“You might wake up and have a great day,” Bridget says. “And then the next day, you’re not able to talk.”
And it’s not just day by day. It can change by the hour or even the minute, she says.
While myasthenia gravis may go into remission for some, it is a lifelong condition. And currently, there is no cure.
Her career plans changed
After living with myasthenia gravis for a few years, Bridget was working in her dream job as a journalist in New York City, but the unpredictability of her illness was making her job very difficult.
“When you can’t walk, when you can’t talk, when you can’t see, when you can’t type [it’s difficult to be] a reporter,” she says.
She had to make the tough decision to leave Manhattan and her career and go back to her first love — working in a bookstore. But she’s quick to point out that just because her dreams changed, that won’t necessarily be the case for everyone with myasthenia gravis.
“We call it the snowflake disease, because no two cases are the same,” she says. “I know myasthenics who work full time, who have careers as doctors, nurses. I know myasthenics who travel the world.”
Now at 47, and having lived with myasthenia gravis longer than she hasn’t, Bridget works as a peer-to-peer counselor with the Myasthenia Gravis Foundation of America (MGFA), helping others come to terms with their diagnosis and navigate their new lives with their condition.
Advice for those diagnosed with myasthenia gravis
Bridget has three pieces of advice for the newly diagnosed.
1. Let yourself grieve
First and foremost? “Give yourself permission to grieve,” Bridget says. “Your feelings count. They matter. It’s OK to be afraid. It’s OK to be angry. But it’s not OK to deny yourself permission to have any of the feelings that you need to have.”
2. Be patient
Bridget’s second key piece of advice is to be patient. When you’re first diagnosed, you might be overwhelmed with information and feel like you need to make a lot of decisions about your life right away.
“You cannot do it all at once. Like anything else in life, there’s going to be a lot of trial and error,” she says. “[The author] Malcolm Gladwell says it takes 10,000 hours of doing something to be considered an expert, right? So figure [you need] 10,000 hours of learning how to be a professional patient.”
Do your research, Bridget says, and find good doctors that understand the condition, can support you, and are aware of new drugs that treat myasthenia gravis.
3. Find a good support system
Bridget recommends joining a support group or a one-on-one support program like MGFA’s MG Friends, or finding an independent Facebook group.
When Bridget was first diagnosed, she had an entire college community that rallied around her. When doctors were saying she couldn’t go back to school for her senior year because of her compromised immune system, her academic advisor promised they would make it work.
“All of my professors had started making arrangements for me,” she says.
When she started to fall into a depression and wouldn’t leave her dorm room, “residential life literally knocked on my door and said, ‘Bridget we have no idea what you’re going through, but we need to get a grip on this.’” And they helped her get into therapy. “I really didn’t know how blessed I was,” she says.
Your life may look different, but that’s OK
Bridget says a myasthenia gravis diagnosis may upend your life, but it certainly doesn’t mean your life is over.
“It’s not the life I imagined, there’s no getting around it,” she says. “But I’ve had opportunities, and I’ve done things that I would not have been able to do if things had gone according to my plan as opposed to God’s plan.”
She says she has hope that others with myasthenia gravis can do the same.
“You will figure out how to live your life,” she says. “It’s not going to happen overnight, but you will figure it out.”
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