As we wrap up the November month, I can’t help but reflect on all the people that support me with my daily battle with myasthenia gravis.
Did you know that November is recognized as National Family Caregivers Month? According to the American Association of Retired Persons (AARP), National Family Caregivers Month is a time “to honor the more than 40 million caregivers across the country who support aging parents, ill spouses, or loved ones with disabilities who remain at home.”
Caregivers take on all different forms. Some are family members, neighbors, friends, or even paid personnel. Personally, I rely heavily on my parents, my sister, my boyfriend, and my close group of friends for an abundance of things. Much of what I need help with has to do with activities of daily living such as grocery shopping, laundry, tidying the house, etc., but I think what we often forget about caregivers is their ability to make you laugh, distract you, be there for you when you need to vent, and ultimately “just understand.” As I have learned with MG, there will be people who just “get it,” then there are the people who just don’t. I will never be able to adequately express my gratitude for those who continue to fight this fight with me day after day.
For the longest time, and even still today, I struggle with the concept of “being a burden” to my loved ones. Most people who aren’t chronically ill will say, “how could you possibly think that?” But after years of soul searching and seeking support, I know I am not the only chronically ill individual who feels this way. Sometimes it seems as if I’m always needing something, or the world revolves around making sure I am stable. One of the biggest learning curves for me when I was diagnosed with MG was acknowledging that I was losing some of my independence and learning how to ask for and accept help when I needed it. It’s not the easiest pill to swallow, that’s for sure.
To all the caregivers, let me say this:
Thank you. Thank you first and foremost for the unconditional love.
Thank you for listening to me when no one else will. Thank you for seeing me and loving me at my darkest hours. Thank you for knowing how to care for me when I am unable to express it. Thank you for breathing life back into me when things seem hopeless.
There is not a day goes by without me thinking about all the wonderful people in my life that have cared for me.
While I may not be able to fully articulate my appreciation, never forget how much I care that you care. It means more to me than you will ever know.
It may be difficult to pinpoint what we are grateful for this year considering all that has taken place, but now more than ever, we must truly celebrate all the caregivers in our lives that make time to support us.
Happy National Family Caregivers Month, everybody.
#MGA #MyastheniaGravisAssociation #MGADigest #MGStrong #MyastheniaGravis #ChronicIllness #RareDisease #AutoimmuneDisease #NeuromuscularDisease
This blog post was written by Meridith O'Connor, St. Louis Program Coordinator of the Myasthenia Gravis Association.