REAL PEOPLE, REAL STORIES
Recognizing Caregivers, Who Walk the MG Journey Too
Here’s a shout-out to supporters from the people whose lives they impact every day—those living with myasthenia gravis.
It’s National Family Caregivers Month, so we’re shining a bright and well-deserved spotlight on all the amazing people who put so much time, effort and energy into helping those living with myasthenia gravis (MG).
Supporters can play a vital part in making a difference in the lives of people with MG—from providing small, everyday acts of kindness to taking on big roles in their loved one’s healthcare, home life and everything in between.
Supporters are important members of the myasthenia gravis community, and collectively we say, “Thank you.” We appreciate everything you do. Here are some words of appreciation from those who know supporters best—namely, people living with myasthenia gravis.
I learned that you have to have an advocate. My daughter is my primary one because she is a nurse. She can talk at the same level as the healthcare providers. I’m very passionate about the caregiver journey in this MG journey. The caregiver also has MG; they just don’t have the physical symptoms.
My MG story started when I was 15 years old. It was definitely a trying time, being a teen and getting a myasthenia gravis diagnosis. My parents stood behind me from day one and pushed to get me help. Several doctors told me I was faking it, but my parents believed me. They trusted me.
This is absolutely a journey involving more than just the patient. The caregiver, the family, immediate friends—they are walking this too.
My caregiver never made it feel doom-and-gloom. He was there. If I got weak and would pull back, he would just step in.
I’m definitely fortunate for the people in my life. They were just so helpful—so, so supportive. That's really what helps me and keeps me going.
If I'm having a bad day, my children are very quick to help. Heat and humidity exacerbate my myasthenia gravis symptoms. When my symptoms get out of control, my children immediately jump in and get ice packs or a fan. Or they give me a back rub, a hug or words of encouragement
Once you're feeling better, don't forget to take care of your caregiver, maybe your spouse, because they need that. When you feel like your body is absolutely failing you, look at that person…and revel in that love and gratitude for them just being there.
Stone Mountain, GA
Having a support system is just very crucial. My supporters are my rock. They're a blessing because they help me through both hard days and good days.
Baton Rouge, LA
After three days of a national handball competition, my MG was really flaring. I could barely walk. My handball partner was super-supportive. We were going to occupational therapy (OT) school together, so she kind of ‘OT’d’ me whenever I was having flares of myasthenia gravis symptoms.
Life with my young son, Jackson, has been one of the most rewarding aspects of my MG journey. My son and the rest of my family are my support team. They give me inspiration to get right back up.
My best friend, as well as my sister, have been with me throughout the MG journey. You may need people to advocate for you when you can’t speak for yourself or are not being listened to.
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