Myasthenia gravis (MG) is an often invisible condition that can have a significant impact on daily life. Three people living with MG describe their unique experiences and offer advice for others who are new to the MG journey.
Myasthenia gravis (MG) is a rare autoimmune condition that causes weakness in the voluntary muscles. In MG, antibodies from the immune system disrupt communication between nerves and muscles, preventing the nerves from sending signals that tell the muscles to contract. As a result, people with MG have difficulty moving the affected muscles.
Some people have localized MG that affects only some muscle groups. For example, ocular MG is a subtype that affects only the eye muscles. Generalized MG can lead to symptoms throughout the body, including in the eyes, face, arms, and legs and the muscles involved in breathing.
People with generalized MG can experience severe fatigue, weakness in their arms and legs, trouble speaking and swallowing, double vision, or difficulty breathing.
The experience of living with MG varies greatly from person to person. People may experience flares (periods when symptoms become more intense) and remission (periods when symptoms decrease).
Treatment options include medications to improve nerve-muscle signaling or to change immune system activity. Another common treatment option is thymectomy (the surgical removal of the thymus gland).
Living with generalized MG can mean navigating challenges in your daily life while your symptoms go largely unnoticed by the people around you. As a result, the impact of MG is often debilitating and can be invisible to loved ones.
Healthline spoke with three people living with generalized MG about their experiences. They offer unique insights into the condition and messages of hope for those who have recently received an MG diagnosis.
The following interviews have been edited for length and clarity.
Ashley Brooks: I wish they understood that it’s pretty complex. People refer to myasthenia gravis as a snowflake disease. You won’t find the same snowflake. So, same thing with MG.
The symptoms can be different. And it’s invisible. So even if you don’t see it or I don’t look weak, I’m experiencing it.
Tyrale George: That you don’t always see it. Before I got better treatment, there were days when I looked like I was OK, and some family members couldn’t understand that I was still struggling on the inside.
They couldn’t necessarily see the weight loss that I had from MG. I also have Graves’ disease, and I dropped 30 pounds. I’m naturally a stoic person. I’m a strong person by nature. So it was hard for some people to see me that way, especially my wife.
But that’s one major thing — trying to get people to understand that you can’t necessarily see what’s going on inside of my body. There are times when I need to rest, even though it looks like I might be lying.
Andrea Divis: We may look normal but not feel normal. For example, this morning I looked in the mirror, and I have this marionette look right now [with facial lines]. For me, that means the muscles in my face are drooping. To somebody who is unaware of that, I look normal. But right now those muscles are weak.
It’s frustrating for us to explain to others when we may not feel the best. You pull up to a grocery store and you take [an accessible parking space]. We need it because the distance from the back of the parking lot to the front may be more than we can handle after walking through a grocery store.
I just wish people understood and were more forgiving about what a silent chronic illness looks like. We may say that we are fine, but that is because we don’t like to worry our loved ones with every little ache, pain, or twitch.
Tyrale: To be extremely patient and not stress over things that do not matter. Because stress, even outside of MG, is, I think, a silent killer.
But with MG, stress literally targets whatever energy that you have. So for instance, as we function as regular humans, we stress a lot. But we also have the energy and the muscles to be able to filter the stress appropriately. We still are able to get tasks done.
When you are untreated with MG, there’s no energy or any muscle to combat the stress, so the stress just does what it wants with your body. And if you stress too much, you can collapse — you can go into a serious flare.
So, while it’s easier said than done, just being patient and not stressing over things that do not matter. Only control what you can control — so, not getting frustrated with the fact that you can’t reach the coffee mug or pick your arm up today. Give it a rest. Give it a try in a couple hours.
Andrea: Get involved in the community. When I was diagnosed, I searched and searched, and there wasn’t anything available. I was lost.
You get this terrifying diagnosis, and when you Google it, it’s scary. It is really scary when you go to Dr. Google, yet that’s not reality.
There is so much more information and support now than when I was diagnosed 7 years ago. There are many support groups where you can educate yourself, ask questions, and speak with others who understand your journey. Most pharmaceutical companies also offer support groups, educational resources, and, at times, financial assistance.
Myasthenia gravis can be a very isolating disease, and it doesn’t have to be. The first 2 years are typically a roller coaster of figuring out what treatments work for you, mourning your previous life, and adapting to your new normal. Don’t let yourself be alone in this journey. Get involved, get your support network involved, and advocate for yourself.
Ashley: Take a deep breath, pause, process. It’s OK to be alarmed because it’s a new diagnosis. When I was diagnosed, it was just so heavy.
I know it’s easier said than done, but take a breather first just to get your mind right. I would say feel hopeful, feel optimistic. When I was diagnosed in 2017, there were no FDA-approved medications to treat myasthenia gravis. Now, in 2026, we have so many. There are options.
So be optimistic, be hopeful. Don’t take the diagnosis as such a doom-and-gloom thing. Of course, you’re being diagnosed with a rare disease — it’s natural to be devastated. But just know that there have been so many advancements, and there is hope of still living a pretty great quality of life.
Andrea: It took me several years to accept that I was sick.
I had my diagnosis, and within 2 months I had a thymectomy. And so I didn’t really feel sick because I didn’t have a lot of symptoms. After I recovered from my thymectomy, I did a Spartan race. And I mean, those are hardcore.
So it didn’t really affect me that much. I had some symptoms and some flares during that first year. [But] I didn’t really accept that I had this really debilitating chronic illness.
And then in year two, I got really sick. That also coincided with COVID. And at the beginning of March 2020, I had to stop working. So it was really hard to accept because the whole world shut down as I shut down. And I feel like I never came out of COVID because I’ve never gotten better since then. Well, a little better.
I kept trying different [treatments] and nothing worked. I kept thinking, “Oh, the next thing, the next thing will cure me.” And it really took moving to California to participate in clinical trials to finally accept that I had a chronic illness.
Then I started helping other people. That, together with counseling, helped me get to a place where, yeah, I understand that I’m sick. I have a new normal, and I just have to kind of move on with my new normal.
Ashley: I would probably say COVID. I was not expecting that.
If you have an autoimmune disease in a world with COVID, you can get sick. [The pandemic] kind of knocked me off my feet.
My background is in respiratory therapy, so I lost my career because I can’t work with that patient population.
It was back in 2020. The first thing was like, “OK, I can’t do that anymore because it’s too risky working in the hospital.” It’s like redirection. What do you do?
I have my blog [Ashley’s Anatomy]. I put more emphasis into that. Also, since I do have a background in healthcare, I’ve been able to find things to do remotely. So I get to use some of my healthcare knowledge.
So just redirecting and finding other things that I can do safely and make sure I can have peace of mind at the end of my work shift.
Tyrale: I’m naturally a stoic person, but a huge challenge was to not be able to do a lot of the things that I once did. Sometimes I had to just sit, and I would get mental fatigue because that’s another side effect.
So brain fog is a huge thing, but it gets better with treatment. But not having the ability to just go and get a coffee or to not drive when I wanted to drive, to not be able to participate in hobbies, to not be able to have family outings, to not do all the things that I once could do that allowed me to be my full self.
I had a lot of slurred speech — so not being able to talk as long as I would like to, and then try and explain to someone what I’m experiencing. That got frustrating over time.
[I used] meditation, sitting in stillness as much as I could. Not masking my mental [state] with music and stuff.
I do well with sitting with whatever problems or challenges that I’m facing. A lot of times I just sit in quiet so that I can filter it appropriately. And I think that makes me stronger in a sense rather than me trying to run away from it or just saying, “Oh, let me just block this out. Let me just block this out.”
No, I like to take things head-on. That way, I can have a better understanding of the problem but also just feel good about what it is that I’m trying to dissect.
Ashley: Self-care to me is always making sure that physically I’m listening to my body and giving it the things that it needs to make sure it’s comfortable.
Every day, I have routines. So making sure I have my tumbler and I’m drinking my one full tumbler of Liquid IV. When I wake up in the morning, I’m making sure that I’m mindful and preparing myself mentally before I do anything. Just to say, “OK, this is how you’re feeling today.” Checking in with myself. Making sure I’m eating, even if I’m working,
My self-care is honoring my body. So whatever my body is saying, I’m listening. I’m like, “OK, this is what we’re doing.”
Tyrale: I read a lot. I have my daily stoics that I’ll read. I love to walk. Walks are major for me.
I am back into fitness. I used to be an athlete growing up, but it’s kind of like therapy now. To maintain remission, I think it’s really good to [stay active in fitness]. It’s something I look forward to. It’s something that is just a part of me now.
These are things that I do to keep me grounded. They keep me in a space where I feel good about the trajectory of where I’m trying to go in life.
And I’ve been trying to read more about other rare disease communities, just understanding them more. It’s opened up my world to other people and what they may be dealing with now that I’m on the side of something that’s rare and severe like myasthenia.
Andrea: I look at my self-care routine in three parts: body, nutrition, and soul. Having a chronic disease feels like my body is trying to bully me, so I try to be nice to it.
I do some sort of exercise or stretching each morning with friends, regular physical therapy, and massages.
I was super fit and active, running marathons, before I got sick. I can’t do that anymore. But the importance of keeping my body moving has been really important. So every morning I get on Zoom with my friends and we exercise. I have to listen to my body for what’s OK for that day.
My nutrition is very important with an autoimmune disease: junk in, junk out. I try to avoid anti-inflammatory foods and sugars. I certainly feel it in my joints when I fall off the wagon.
Finally, my mindset. It’s easy to go down the “woe is me” path, but what good is that? When life gets to me, I have a small pity party for myself and turn to my tribe for some talk therapy.
I started going to support groups. I started helping other people. I’m not able to work anymore, so being able to help others has been a big thing for me because it’s given me purpose again.
Tyrale: Support is extremely important. I don’t know how some of these people who have the symptoms that I have are functioning alone.
To have something so severe on your muscles, and where you’re having these flare-ups and serious secretions. I had a lot of secretions — choking up and spitting. It was hard to keep liquid and food down. If a meal was prepared, it would probably take me all day to eat that one meal.
So support is extremely important. Especially when you’re trying to get to your appointments. I’ve had scans, I’ve had scans without contrast, MRIs, EMGs — I don’t know; you name it. I just felt like I was being experimented on.
The more I got sicker, the more I just kept thinking about those who don’t have the support.
It helps that my wife is a nurse. We started noticing the droopy eyelid [a symptom of myasthenia gravis] in 2022 at a football game. [Medical professionals] were saying that they couldn’t see me until summer the following year. So I think because she was able to pull some strings and got me moved up along in the process, I was able to be seen a month later.
Luckily, I also had other nurses in my family as well, so we would always ask them questions.
The parents would always come by just to make sure everything is good. Also, some of our close friends — they would drop by to help the kids sometimes because there are times I just couldn’t do it. I couldn’t do it.
Andrea: I have a tribe of friends and family that are critical for me.
There’s a lot of things I’m unable to do because of myasthenia gravis, whether it be through muscle weakness or just I don’t have enough spoons for the day. So my mom, my sister, and my son. My oldest son lives with me. He helps a lot around the house and does a lot of the chores and gives me rides.
My best friend is my rock. She’s what’s been keeping me going for the last 7 years. But I’ve made a lot of good friends through the community.
The true friends that I had before I was sick really dwindled. I lost a lot of friends being chronically ill, but I gained a lot of new friends through the community.
Asking for and accepting help has been a challenge for me, as I always prided myself on my independence. I tell others, “If someone asked you to help them to the car with groceries and you were able to, would you say no? Then why do you find it difficult to ask someone else?”
Support groups have been a wonderful place for me to share and learn. Leading one has benefited me as much as the people who attended it.
Ashley: I think having support is up there in the top three with MG.
My sister, we’re each other’s caregivers. We live together. We’re a similar age, so we kind of take care of each other. So if she is having a bad day, I’m there. Or if I’m having a bad day, she’s there.
And then, of course, my mom. She’s awesome. She’s a huge support.
There are also support [organizations] for MG like the Myasthenia Gravis Foundation. The Myasthenia Gravis Holistic Society posts so much helpful information, especially for Black people living with myasthenia gravis.
Andrea: When I was first diagnosed, I went down the rabbit hole of doom and gloom, looking at Dr. Google. No, myasthenia gravis is not something that I would sign up for, but I have discovered a new life that I would never have experienced without this disease.
I was able to connect with my sons during the end of their high school years. I am so lucky that my family and true friends accept and understand my capabilities. I have a new perspective on life and what is really important: my health, my family, and my friends.
Ashley: I always like to let people know I had open-chest surgery in 2017 to have my thymus removed — a thymectomy. And people always, now in 2026, since I’m on social media, reach out and say, “How are you doing? How’s your progress? What do you think has been the most pivotal thing that you’ve done on your MG journey?”
I definitely think having that thymectomy really gave me the quality of life that I wanted. It wasn’t immediate, but I would say 2 to 3 years after the procedure, I noticed just so many more improvements. The quality of my life improved, and I was like, “OK, well, maybe this won’t be miserable forever.”
So I always like to tell people, yes, I had a thymectomy. It was invasive, and yes, they opened my chest. But would I do it over again? Probably 100% because of the results. I don’t think that I would be where I am right now [if I hadn’t had the thymectomy], even with my treatment.
Tyrale: It’s good that we have better treatment these days because I think [MG] used to be considered a death [sentence], especially when you had severe breathing problems.
And just to be patient, to challenge the doctors. And I’m saying that because I know a lot of the time they want to go by the book. Even though they can see that you are in bad shape, they don’t want to be too aggressive with certain medicines. I know it’s hard, but I think challenging the doctors is a huge one.
And if you need a second opinion, please get a second opinion, because you can’t sit in flare-ups for too long.
Also, not stressing. Just being patient. Not being as frustrated with what you can’t do. There is a light at the end of the tunnel as long as you’re doing your part and as long as you are getting the treatment that you need.