By Drea Carbone, as told to Sonya Collins
When I was diagnosed with myasthenia gravis in 2017, I had never heard of it. I was given a lot of misinformation and also some very well intentioned – but bad – advice.
Advice That Missed the Mark
It’s nice that people are thinking of me and wanting to help, but it’s not always helpful.
'Have you tried yoga?'
I can’t tell you how many times someone has asked me, “Have you tried yoga?”
Yoga is great. People love yoga, and I’m all for it. But I can’t do yoga, and it’s not going to cure me either. There is no cure for myasthenia gravis. I have friends with MG and we all get this one a lot, and we just have to laugh.
'Eat a baked sweet potato every day.'
This was my favorite thing that anyone had ever said to me. They were just trying to help, but it was so ridiculous. I was doing fundraising for MG Walks with the Myasthenia Gravis Foundation of America, and my mom posted the link to my fundraiser on social media. Someone commented on my mom’s post, “I know someone who knows someone who had MG, and they ate a baked sweet potato every day and lived to be 88.” I’m sorry, but a baked potato isn’t going to cure me.
You have to laugh. If you can’t laugh and see the humor in these things, you’re going to have a very hard time.
'You just need a healthier lifestyle.'
Besides yoga and sweet potatoes, there are all kinds of lifestyle changes you can make – diet, exercise, cut out sugar, quit smoking – that are going to help. Yes, these would be helpful to anyone’s health, but they are not going to cure MG. People who offer this advice need to be careful because sometimes, when you say, “If you just cut out this” or “If you just did that,” it sounds like you think it’s our fault, like I somehow caused myself to get this disease.
Helpful Advice That Hit the Bull's-eye
Not all advice is bad. Here is some really great advice and tools that have lessened the effects of my MG.
'Based on what you’ve said, maybe you’d like …'
Now, my closest friends have really stepped up with some great ideas and advice. They’ve bought me different doodads and gadgets that they’ve seen online and said, “I’ve heard you describe this specific problem that you have, and I thought this might help.”
For example, I have trouble doing things that require me to reach my arms over my head. So my friend bought me this silicone comb that helps suds up your hair in the shower to make shampooing easier. She said, “I read about this and it seemed like it would be a good fit for you.” She got me a grabber, too, so I can extend my reach.
My boyfriend bought me a step stool so I could reach for things.
I have double vision, too, so I use what’s called an occlusion foil. It’s a patch on my glasses that covers half of one lens to help with my double vision and force me to use only my good eye. Someone also suggested a little doodad that archers use for aim assistance. It clips over part of the lens of your glasses, and you just flip it up or down. I use it when I have a new pair of glasses that I haven’t put the foil on yet. I had never even heard of this before this person suggested it.
'How can I support you?'
A lot of times friends will see problems that I don’t even realize I’m having because I am just so used to them, and they see ways to help solve those problems. Or they ask – and this is the best thing anyone has ever said to me – “How can I support you?” That lets me know that they are genuinely willing to help – more than if they were just to say “I’m thinking of you.”
Be your own advocate.
The best advice I ever got was from a health care provider who told me to be my own advocate, to speak up, ask questions, and do my own research. That advice was a game-changer.
It’s important to remember that not all doctors have experience with MG. Even MG experts don’t know what it’s like to live in your body 24/7. Nor do they live with all the side effects of treatments or deal with the day-to-day difficulties of the disease itself. So not all of the advice they give is the best advice – and sometimes you do need to question it.
I don’t want others to go through what I have – sorting through misinformation and sometimes bad advice. That’s a big part of why I try to be an advocate for others, too.
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SOURCE:
Drea Carbone, volunteer, Myasthenia Gravis Foundation of America, Fort Washington, MD.
