3 Ways to Support a Friend With Myasthenia Gravis
Last updated: September 2023
Being diagnosed with myasthenia gravis (MG) is scary. For me, suddenly facing this life-altering diagnosis was shocking. Having a strong support system was and is still crucial to my healing journey.
Here are 3 ways that my community made a lasting impact on my life and my family's lives during that turbulent season.
Be present and proactive
When I told my friends about my diagnosis, their reactions revealed a lot about our friendship. Some friends sent sympathetic texts. Some asked how they could help but never followed through. Many disappeared. The friends who showed up made all the difference.
MG presents itself in different ways on a day-to-day basis. If you have a friend with MG, pursue them intentionally and consistently.
Offer to come over with a meal and listen to what they are going through. Invite them to hangouts, but don't take it personally when they decide not to go. Don't give up on them.
In the first year of MG, I found myself bedridden, scrolling through social media. I watched as my friends' lives went on - traveling, going out, and pursuing their careers. The more I scrolled, the more lost and depressed I felt.
It made all the difference when I would receive a text or card from a friend. Knowing that they were thinking about me made me feel less alone.
Be a source of encouragement
When I was experiencing all of the symptoms of MG, I felt hopeless. I wondered if it would ever end.
Having someone say "things will get better" or "everything will be okay" sounds cliche, but when they came from a sincere heart, they were words I clung onto. Remind them that their disease does not define them, and this hardship will pass.
Offer to help in specific ways
As a mom with a toddler and baby on the way, I could barely take care of myself with the demands of an energetic boy.
I will never forget my friends who came and occupied my toddler for a few hours so I could take a shower and get some rest. Ask how you can specifically help your friend or loved one according to their situation.
Household chores can be difficult for people with MG. Offer to bring dinner, and wash dishes before you go. Bring a home-cooked meal or fresh groceries. When I was too weak to cook, I longed for someone to bring a home-cooked meal. Ordering out was expensive and often not nutritious.
Having MG comes with many hospital visits and treatments. The side effects of treatments and their pre-medications can make it difficult to drive, let alone have double vision. Having someone drive me to and from my appointments was crucial to my healing journey.
Be their advocate
When I attended my first MG support group a few months after my diagnosis, I found out about the annual MG walk. The organizer of the event was looking for volunteers and I jumped on the cause. I thought it would be a great opportunity to raise awareness for this new diagnosis I was facing.
I was amazed by how many of my friends came out and donated to the Myasthenia Gravis Foundation of America. It meant the world to me that they would dedicate half a day to walk with me and learn about MG. I still feel very cared for when my friends are curious and take the time to learn about MG.
If you have a friend or loved one with MG, know that you can play a significant role in simple ways. I hope these tips give you some ideas on how you can show up and impact their lives.
How often do you experience MG exacerbations/flares?