There are a lot of factors involved in managing myasthenia gravis (MG). Taking a self-driven approach is one way to feel more involved in your care. It may also help you ensure you’re getting the style of care you really want from your healthcare team and your support system.
For Vanetta,* who was diagnosed with MG when she was 16 years old, self-driven care means knowing the signs of the disease and knowing her body. “Earlier on in my diagnosis, I ignored the symptoms I was feeling because I didn’t want to stop what I was doing. I didn’t want to stop working.” Vanetta shared. “So now, as I’ve been living with MG for many years, I recognize the signs that a flare-up may be coming, and I let the people around me know and keep my doctor in the loop.”
Zach,* who also lives with MG and was diagnosed in 2015, considers self-driven care to mean watching out for yourself as a patient. “You have to have your own back,” he said. “You need to keep your own records, carry those records around with you and always speak up for yourself.”
Whether you have a large support system or try to rely mostly on yourself, keeping up with all the pieces of your MG management plan may sometimes feel overwhelming. The five tips below may help you drive your own myasthenia gravis care and be a strong self-advocate.
1. Build a care team you’re comfortable with
Finding the right primary care provider and neurologist may take a lot of trial and error for some people. These doctors play a big role in your myasthenia gravis management, so building a care team you feel connected to and are comfortable with may help you take a more self-driven approach to care. This quiz on what to look for in a doctor may help you discover what type of neurologist or primary care provider could be best for you.
“I’ve done a lot to find a doctor who actually ‘gets it,’” Zach said. “I trust my primary care provider and neuromuscular specialist now, but if I have to go to the hospital unexpectedly, I find it challenging.”
In fact, Zach described finding himself in an especially challenging situation after moving to a new state. Because he’d stayed within the same hospital system, he assumed there would be no issues transferring his records to his new healthcare team.
But it wasn’t until he shared specific test results himself that his new team realized some of his records hadn’t made it to the new office. And having all the right information helped them really understand what he needed. “The new doctor looked at it and said, ‘This was not there in your chart.’ Since then, I feel as though I’ve been getting consistent treatment.”
I make sure to speak up and share all of my own records.
“I keep a journal where I track my symptoms and medications. Whenever I see a doctor, I also follow up with an email to have documentation of what I’m feeling and their responses to that feeling,” Vanetta said.
Keeping your own documentation may be especially helpful if you’re seeing a doctor who you haven’t been treated by before. “If I find myself unexpectedly in the hospital for an emergency and I’m seeing providers who aren’t familiar with my health history, I make sure to speak up and share all of my own records, so everyone is on the same page,” Zach said.
Zach also shared that he finds it important to keep his health history up to date. As symptoms and/or medications change, he tries to remember to update his own records right away so his current information is always available.
For more tips on planning ahead for doctor’s appointments and driving your care, check out this video discussion on MG Real Talks: Self-Advocacy to Better Partner with Your Doctor.
3. Communicate clearly and frequently
When friends and loved ones first hear of myasthenia gravis, they may not know the full impact of MG for you or what your symptoms may look like. It can be helpful to have honest, frequent conversations about it. If you’re wondering how to talk to your family and friends about MG to help them understand what you’re going through, consider reading this discussion guide.
Christian could read the signs and be right there.
“At this point, my husband Christian really knows what my symptoms look like, and he handles things around the house.” By going with her to several doctor’s appointments—and researching MG on his own—Vanetta’s husband was able to understand her symptoms even when they were new to life with MG. “When we were just dating, I never had to openly admit when I needed help. Christian could read the signs and be right there,” Vanetta said.
Just as it could be good for your relationship with your loved ones, your relationship with your care team may also benefit from communicating clearly and frequently.
4. Set reasonable goals and expectations
Consider what you want to get out of a doctor’s appointment before you arrive. Does your doctor understand the severity of your symptoms? Do you have any new concerns since you were last there? Have you shared your health goals? Do you want to learn about MG treatment? The time you have with your doctor is likely to be short, so having a plan in mind before you come into the office may help you prioritize and get your biggest concern(s) addressed that day.
It can be just as important to ensure your loved ones know what they can reasonably expect from you. Vanetta’s husband may have tuned into her MG symptoms right away, but not everyone picked up on her needs so easily. “It was actually harder to get my friends to understand that, yes, we went shopping yesterday and today you want us to go to a movie, but I just can’t do it. Shopping yesterday took me out.” It took a little time for her friends to really understand what she needed—and when.
5. Lean on supporters and ask for help when you need it
“My husband and my mom make a great support team for me,” Vanetta said. “My mom likes to know the bigger picture and asks all the detailed questions at appointments, and my husband is focused on being there for me at home, in the day-to-day.”
Knowing when to ask for help may help you get the care and attention you need. For example, Zach appreciates small gestures of support, like his neighbors taking his garbage cans to the end of the driveway for him. He also has friends he relies on to take care of his pets if he’s unable to, which he says is a huge relief. “I have ferrets—one of the few animals I’m not allergic to—and there are not a lot of people who are comfortable with ferrets!”
Support looks different for everyone, and that’s okay. Do you prefer to be more independent or lean on others while managing your MG symptoms? Try taking our quiz to discover how you approach caring for your MG.
Looking for more ways to drive your own care? If you aren’t already part of a network of others living with MG, consider connecting with an advocacy organization to learn about support groups in your area.