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.
Show Sources
[MUSIC PLAYING]
JUSTIN BARNES: As a caregiver,
getting some systems in place
makes a big difference.
So one of the big tasks I have
to take on is the awareness
that whatever my day might have
been might change in an instant.
And having systems in place
really makes a big difference
in being able to navigate that
without a lot of frustration.
Communication and caregiving--
they're a requirement,
or otherwise, this just doesn't
work.
Not only her communicating
her needs to me,
but as the caregiver,
I have to communicate my needs
to her, as well, because burnout
is extremely high when you're
doing this.
And the times that have been
the worst
is when our communication has
broken down, for whatever
reason.
It also matters for the people
around us, too, because we might
require help.
I kind of have my hand almost
on everything, outside of what
she kind of tries to do
for her business stuff.
That's where trying to find
balance of being a caregiver
and also allowing her to have
some independence
is so important, because nobody
wants to feel like they're
in a position where they're
a burden.
So emotional support is huge.
I do the majority
of the cooking.
So some days, because she has
trouble swallowing,
we have to have a menu that
is soft food only, to make sure
that she's getting
the nutrients,
but that she's able to get it
down without choking.
That's been a big one, cutting
foods up small enough so
that she doesn't have to chew
too much, because that can
create fatigue, and then she has
trouble getting the food down.
With something like myasthenia,
you end up having to help people
move a lot.
And moving people can be very
difficult. It can be very
dangerous if you don't know what
you're doing.
And it can actually harm
the caregiver as much as it
could potentially harm
the person that they're taking
care of, if you're not prepared.
I find strength training to be
invaluable, not just because it
makes helping someone easier,
but it teaches you how to move
your body in safe ways.
Just general movement patterns,
getting yourself stronger--
these things are vital.
So managing energy can be very
tricky.
The biggest one I found
is to try to work on your sleep
hygiene.
I mean, there is no better way
to get your energy back
than a good-quality night's
sleep.
I try to put my phone down
earlier in the evening now.
I try to make sure that I don't
drink coffee too late
in the day--
set myself up for success
when I go to bed at night,
so that I'm not just laying
there, tossing and turning.
As a caregiver,
I find it invaluable to attend
her appointments
because if she's going alone,
things can be lost
in translation.
And then there are times where I
have questions for the doctor
when they bring things up.
And I need those answers, too,
because I'm here 24/7.
They're not.
As a caregiver, it's absolutely
vital to find time for yourself.
You have to, or you're going
to end up burning out.
You have to make sure
that you also are able to live
your passions, too.
Getting into the role
of caregiver should not be taken
lightly.
It can be emotionally
and physically very taxing.
You need to have your eyes wide
open.
You need to understand
that your life is going
to change in ways that you have
no ability to identify when you
begin.
I've found it's made me a much
better person, a much more
empathetic person.
Do everything you can do to put
yourself in the best position
to be the best caregiver
possible.
And always, always, always
communicate with the person
you're taking care of
and the people around you,
because you're going to find
people want to help.
Let them.
Photo Credit: E+/Getty Images
SOURCE:
Drea Carbone, volunteer, Myasthenia Gravis Foundation of America, Fort Washington, MD.
