The unexpected perks of living with chronic illness
Managing MG is hard, but it's taught me some valuable life lessons
Living with a chronic illness like myasthenia gravis (MG) is no walk in the park. Sometimes I roll.
Some days, just getting out of bed feels like a herculean task worthy of a medal. Yet among the challenges that come with living with MG, I’ve discovered some unexpected perks. A couple of them might even bring a smile to your face and lighten your Atlantean load. Here are a few of my favorites:
The comfy clothes revolution: When you have MG, comfort is queen, which means wearing leggings, oversized sweaters, and fuzzy slippers is essential. Who needs fancy dresses, mile-high shoes, or tight jeans when you can float around in a personal cocoon of coziness? This is especially important when receiving intravenous immunoglobulin (IVIG) therapy. The more comfy, fun, and funky, the better.
The art of saying no: Before my diagnosis, I was a “yes” person: I’d say yes to every call for help, every event, every request. MG taught me the invaluable art of saying no. This is a little difficult for me, as I’m still learning how to do it without feeling guilty. I have to prioritize my health and energy, so I agree only to the things that prompt an emphatic and enthusiastic “yes.”
Naps are encouraged: Nap time isn’t just for toddlers. With MG, I’ve realized how important getting adequate sleep is to living my best life. Sometimes that means taking a nap in the middle of the day. I wish I could say I’ve mastered the art of catnapping, but I need at least 45 minutes to feel refreshed. Besides, who doesn’t love a good nap?
Finding my tribe: A unique bond forms between those of us who live with chronic illnesses. I’ve met the most incredible, resilient, and empathetic people through support groups and online communities. We share tips, encouragement, and a good dose of laughter, which sometimes is the best medicine.
It’s also a community that steps up and helps as needed, without questions. Indirectly, MG has led me to a tiny little community in northwestern Wisconsin that I call home. I can’t imagine living this life with all its ups and downs anywhere else.
Little victories: When you live with MG, you learn to celebrate the small wins. Getting out of bed, taking a shower, cooking a meal — every achievement, no matter how small, is a victory. This has taught me to appreciate the little things in life and to find joy in everyday moments.
A new perspective on life: Living with a chronic illness has given me a deeper appreciation for life’s simple pleasures. Sunsets, laughter, and reading a good book are more precious now than ever before. These moments in time become a reminder to slow down, savor each day, and find beauty in the mundane.
Living with MG is challenging, but these unexpected perks, along with a healthy dose of humor, help me navigate the journey a bit more easily. They help me continue to live my best life, on my own terms — which is pretty amazing.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
About the Author
Barbara M. Barnes
I contracted MG from the one dose of Imfinzi (via infusion). 2023. I have stage 3b lung cancer and received both radiation and chemo treatments before the one dose of Imfinzi. I've seen only one MG practitioner. Her doctor (neurologist) is not available to see patients. I'm told there is a shortage of doctors in this area that treats MG. I took pyridostigmine for a short period and found that the side effects were intolerable for me. So, I haven't received any medication in over a year. My symptoms have changed some and I believe I have ocular and generalized MG but have not been diagnosed, officially. My knowledge of MG comes from my own research online. I'm in pain most all the time, mainly in my neck when I turn my head or lie on my back. My legs don't work right some times , I've become weaker in body, my throat seems swollen all the time and I have had to give up my life as I knew it previously. My oncologist has apologized to me.
Billy Tucker
Thank you for these insights. Saying No has been my big takeaway too.
SHIGUFTA MORALES
I have found my people here!! I thought I was the only one who had the symptoms I had. It's not a thing to celebrate per se, but believing that I am not crazy, is reassuring. I was made to feel that way when I was first diagnosed in 2004. I developed symptoms when I was in my first trimester of pregnancy. I was often looked at as "attention seeking" or even "lying" about my symptoms. A Neurologist told me that, what I described as symptoms was not in the PDR, as she pointed to a 4-5 sentence paragraph on MG. It's not a good place to be mentally. I overcame these notions because I knew what I was going through, and she had never walked in my size 8's.
I have fallen to the ground 8 months pregnant as though my knees were full of butter. I have dropped cans of coffee trying to make coffee. I dropped my son trying to move him from his bassinet to my bed. Thankfully he was still over the bassinet. These are the challenges Myasthenics endure. No one will ever know how every single day getting out of bed (if we can) that day and doing something as simple as brushing my teeth, is a challenge. Yes, I may look normal and may even seem as though I don't have a worry in the world, But in reality, I'm the woman who strives to put a smile on my face so I can be seen as Non-disabled. "Thank you" to All who are my partners in this journey.
Jean McCarroll-Ward
Thank you for sharing. I agree with all you stated. Since my diagnosis in May, I have slowed down and appreciate the simple things. Slowing down and not feeling guilty saying no we're challenging. Putting my needs first is also hard, but at 68.....I think it is time. Having a positive attitude helps, I wish everyone joy in the day, I'm hoping to find a small group of people here in NC..