Discover some ways to help overcome feelings of isolation with myasthenia gravis (MG).
Even if you have a great support system, it’s understandable if you feel lonely at times while living with myasthenia gravis. Living with a chronic disease can be isolating since you’re dealing with something that others in your life may have trouble comprehending, as much as they might try to relate. It may also be possible the people in your life just don’t live close enough to give the full support you need.
In general, navigating the ups and downs of living with MG and its effect on your well-being may be difficult. But others in the MG community can relate, and they’ve shared tips with an aim to help you cope and feel less alone.
Vanetta,* Chris* and Julia* all live with MG and have found ways to move past those feelings of isolation. Consider taking the steps below to help burst your isolation bubble.
Don’t Put Pressure on Yourself
Be empathetic with yourself about why you’re in this position in the first place. Acknowledge the things that are out of your control, like MG symptoms or the time of year if it’s a difficult season for you, and how those factors might affect your mindset. Vanetta emphasized the importance of then allowing yourself to accept the emotions that come with that.
“Just know that your feelings are valid and there is no wrong way to feel,” said Vanetta, describing how common she believes that kind of struggle is.
Chris also expressed the power those feelings may hold and how easy it may be to overthink. “I just feel like I’m the elephant in the room,” he said. “Isolation. That really hits the nail on the head. Figuring out how to get out of it—that can be a vicious cycle.”
- Quick tip: Set personal expectations for how you wish to move forward, based on your unique feelings.
Once you’ve acknowledged your feelings, think about the expectations you want to set for yourself, as there is no one-size-fits-all approach to combatting isolation. Ensure you’re comfortable with how you move forward and focus on finding coping mechanisms that make sense for you.
Learn How to Best Communicate with Those Around You
Identifying effective ways to communicate with your loved ones may help you overcome isolation. Try reviewing this discussion guide as a resource to lead such conversations.
One scenario that may contribute to isolation—and where a conversation might benefit—is being frequently left out of gatherings. Vanetta experienced this when friends stopped inviting her to events like parties, amusement park outings and barbecues because she occasionally had to bow out in the past due to MG fatigue. “I think where the feeling of isolation comes in is when people make assumptions,” she said. “It does make me feel completely alone, even though I have this huge support system.”
Let me be in charge of my body. Let me be in charge of my feelings.
This reoccurrence eventually motivated Vanetta to be clear with family and friends that having the option of accepting the invitations would make her feel more included. “Let me be in charge of my body. Let me be in charge of my feelings,” she said. “They started to understand and respect that.” She also noted that when saying such things face-to-face feels intimidating, she sends video messages or written letters to get her points across.
Another method to help the people in your life understand what you’re going through is to find little ways they can relate. Julia shared a time when a past roommate of hers was sick with the flu and noted how exhausted they were. “I said, that’s how I feel most days,” she recalled.
Vanetta has tapped into this approach too, but by giving gifts. One holiday season, she gave a family member a scented lavender candle, something that has helped Vanetta cope with insomnia brought on by MG symptoms. Explaining the benefits of the candle opened up a conversation about MG and how Vanetta’s family could best support her. “The holidays can be the perfect time to let your family know they’re a great support system, but here’s how they can better support you going forward,” she explained. “It doesn’t have to be a big to-do.”
Unfortunately, these conversations may feel more difficult for others. Chris shared that some of his family members haven’t been able to understand his challenges with MG, and the disconnect becomes more prevalent during larger family gatherings. “My anxiety goes through the roof. It’s like being the black sheep of the family,” he said.
- Quick tip: Invite loved ones to a support group meeting if you think it may help you to express your feelings.
He says his two daughters, however, have been major lines of support. If you’re struggling to communicate with your family about MG, consider taking them to a support group meeting where the conversation can be facilitated by others who relate. Chris said his daughters joined him for some meetings, which helped them learn about the disease and be able to look out for him. “If you can get that kind of support from people, don’t push it away. Accept it,” he emphasized.
Additionally, don’t hesitate to reach out to a counselor or therapist if you need further support. If you notice high anxiety or even feel particularly down in the winter months, consider talking to a mental health professional and/or consulting your doctor.
Revisit Hobbies, Try New Ones and Make Modifications
Participating in your favorite activities might be a great outlet to move past isolation. While your ability to participate in some activities may be limited, there are some ways to still engage in them with modifications—or you could possibly find a new but similar hobby that’s more fitting to your abilities.
- Quick tip: Even if you only have a few minutes, spend it doing something you enjoy.
A big passion of Vanetta’s is fitness, so she makes sure to find some way to do it, even if it’s minimal when she’s feeling symptomatic. “If I do something physical by the end of the day, I don’t feel defeated,” she said, noting that she’ll even just dance in the living room for a few minutes if that’s all she’s feeling up to.
Julia has made tweaks to her hobbies as well. She was an avid athlete before her MG diagnosis, so it was important to her to continue being active however she could. “For me, sports were really important and the way I liked to socialize,” she explained. “I had to figure out ways I could still engage with my friends that didn’t take as much of a toll on my body.”
To make this work, Julia plays handball with her friends by implementing special rules for herself, like getting twice as many bounces to get to the ball so she doesn’t have to run as much. She has been able to manage her MG symptoms and also maintain a social life to her liking. She also enjoys hiking with friends but has learned to communicate up front where she might need their assistance—like carrying the hiking gear, choosing trails with fewer inclines and picking times of day that aren’t too hot or humid.
Chris enjoyed scuba diving before his MG diagnosis. While that hasn’t been as feasible for him post diagnosis, he’s open to different water activities, like fishing. He has also tried new activities, like golf, in a modified way, simply hitting a few balls and having quick access to go inside when he needs a rest or break from the heat.
No matter what happens, there is hope.
Show Love to Yourself
Connection with others isn’t the only way to alleviate feelings of isolation. Meaningful ways of caring for yourself on your own may be just as important! Whether you take a few minutes to find a new self-care activity or speak with your doctor to ensure you’re on the right treatment for your needs.
- Quick tip: Write love letters to yourself that you can read later if you need a pick-me-up!
Vanetta shared that she journals and, more specifically, writes love letters to herself for when she’s feeling alone. She explained that reading those letters when she’s in a negative mood helps her feel better and move forward. “It doesn’t stay this way forever. At some point, you overcome this,” she said.
In a similar sentiment, Chris chooses to focus on the possibilities for his future. He copes by reminding himself of the reasons he has hope.