It may be time for supporters to let go of some personal expectations. It’s okay to cut yourself some slack!
As a supporter of someone living with myasthenia gravis (MG), you may do a lot. Your instinct may be to care for your loved one by doing as much of the housework, chores and errands as you can. While it may be done with good intentions, that instinct to do more may not be as helpful as it seems.
We recently spoke with some supporters of loved ones with MG who shared five things that bring greater balance to their lives.
1. Don't Forget to Care for Yourself
Supporting a loved one with myasthenia gravis may have challenges, so it’s important to consider your own needs also. Self-care includes things like eating healthier, exercising and getting enough sleep.1-3 The better you feel, the better you’ll be able to support your loved one with MG.
Consider trying to pursue interests that fit your unique personality and lifestyle and will energize you. Spencer, a self-described introvert, cares for himself by finding some alone time to recharge and focus on his own projects. But self-care for Travis, who is more extroverted, is different. He actively seeks out other people by calling them, enjoying game nights with friends or playing soccer.
Likewise, Iris recently joined a ski club a few years after her husband, Victor, was diagnosed with myasthenia gravis. Now she has a choice to ski either with her new group or at lower altitudes with Victor, who’s in remission but has difficulty skiing at high altitudes.
“I’m just sort of finding my own way,” Iris said of her newfound activity.
2. Don't Hold Your Feelings Inside
It’s easy to overlook your own well-being when you’re a supporter. The same goes for other people who sometimes view supporters as completely selfless givers and refer to them as “angels.” While this is done with the best of intentions, it may make you feel like you are not allowed to have or express any negative feelings.
But you might need support too. You are a person with your own needs and feelings. So, try to share your feelings with your loved ones in an upfront, honest and respectful way.
Diane, a psychologist and supporter of her wife, Kathy, who has MG, suggests talking with your loved one openly but with mutual kindness. She and Kathy call it ‘kind confession.’
“With kindness, you can discuss sensitive subjects, like household chores, without fighting or silent resentment,” Diane said.
“This approach has worked for Spencer and his wife, Stephanie, who lives with myasthenia gravis. They say they feel comfortable talking about sensitive matters, and it’s led to some answers. For example, they resolved issues around household chores by once hiring a housekeeper. Now, they divide chores between the two of them.
3. Don’t Feel Like You Have to Do It Alone
Although at times difficult, asking others for help may be just what you need to care for yourself. You may want to reach out to family, friends or a community-based or MG-related support group.
Travis and his wife, Kait, actively sought out support from their family when they were facing challenges related to myasthenia gravis. They did it in a big way, by moving across the country to be closer to Kait’s family.
“Asking for help was difficult for me because it made me feel kind of vulnerable. But it’s something that I’ve learned to do,” Travis said. “Getting help goes a long way. I believe that, because of it, Kait and I have created a more meaningful relationship with her family.”
Accepting help when it’s offered also may help lighten your load. Iris said that when Victor was hospitalized due to a myasthenic crisis her friends pooled some funds to buy her a gift of her choice. She hesitated at first but eventually opted to treat herself to some take-out dinners.
“I’d come home to a ready-made dinner. It actually gave me something to look forward to during a difficult time,” she said.
Getting help from others goes a long way.
4. Don’t Stretch Yourself Too Thin
Sometimes you may feel overwhelmed. There will always be chores to do and errands to run. Try to pace yourself or allow yourself an occasional break and some “me” time.
“Burnout can be a thing,” said Spencer. “Allow yourself to take it easy for a day when you need to. When you add things to the mix of what you do every day, whether it’s work or caring for kids or animals, you can’t be doing everything all the time. And that’s okay.”
Now retired, Iris said she’s grown more laid back about housework, but also more organized with her time.
“If I can’t get to something today, tomorrow’s another day. I just sort of let it go,” she said. When she does chores, she’s learned to fit them in when Victor rests after a walk or workout.
If I can’t get to something today, tomorrow’s another day.
5. Don’t Isolate Yourself, Even if the Person You Care for Can’t Leave the Home
It’s important to get out in the world, whether it’s stepping into nature or connecting with friends and family. Iris and Victor formed an MG support group that includes supporters to create new connections.
Spencer plans to return to taking short hiking excursions, something he loves to do, after the pandemic is over. Meanwhile, Stephanie organizes a shared hobby of theirs—regular game nights with friends over Zoom.
Isolation can take an emotional toll as well, so try to stay connected to others, even if it’s online for now, and try to remain hopeful and optimistic.
“Life that includes myasthenia gravis can still be fun,” said Travis. “Although it may be different, you can still live it to the fullest.”