FEBRUARY 2021 | 8 MIN READ

REAL STORIES

Daniel’s Story: How He Found Ways to Balance Mental and Physical Health with MG

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Growing up, Daniel was always involved in sports and fitness, and he eventually established a career in the field. When he was diagnosed with myasthenia gravis (MG), his world was turned upside down. This California native had to make changes to manage the mental and physical effects MG had on him and to help achieve his professional and fitness goals. He spoke with MG United about working through life with MG.

Tell us a little about your life before you were diagnosed with MG.

I grew up in California, and I was your typical California kid—fairly athletic, and I played sports throughout my childhood. I even played football in college. After I graduated, I moved back to my hometown and started working. I was starting to build a life for myself. I was always out doing something—hanging out with friends and family or working out.

Eventually, I landed a career with a fitness company that works with athletes to develop their training to get the most from their bodies.

What was the first myasthenia gravis symptom you noticed?

The first time I experienced symptoms was on the Fourth of July. I had blurry vision. It came and went within 30 minutes. I didn’t think much about it. I assumed that I might have had too much to drink. A month later, my blurry vision returned, but this time, it lasted an hour or two. I didn’t tell anyone. I don’t know why; I just didn’t say anything.

A few months later, in November, it came back, and it stayed around. I was confused, but I still wasn’t all that concerned. I finally said something to my then-girlfriend. She was a little bit alarmed—more than me, actually.

I didn’t tell anyone. I don’t know why; I just didn’t say anything.

When did you realize that something was really wrong? What tipped you off?

After Thanksgiving, my vision still wasn’t right, so my girlfriend at the time convinced me to go to the doctor. All the test results were normal. I basically laughed it off. Eventually my vision got to the point where I couldn’t drive, so my girlfriend had to take me to and from work, but I kept working through it. And I was still working out, too. In January, my friends saw me and commented that I didn’t look like myself. At the gym, I could barely lift 10- or 15-pound weights. That’s when I realized something serious was happening to me.

My girlfriend took me to the doctor again and again. I had a lot of tests done. When I could barely get out of bed one morning, she took me to the ER. The doctors initially thought I was suffering from another neuromuscular disease, so they did a spinal tap. Later, blood tests confirmed that I had myasthenia gravis instead.

At the gym, I could barely lift 10- or 15-pound weights. That’s when I realized something serious was happening to me.

How did you react when you received your myasthenia gravis diagnosis?

I didn’t really know much about MG, so I didn’t really know what to think. The only thing I knew about MG was information I gained through my then-girlfriend. Her dad has MG. Ironically, she had mentioned MG when she was taking me to appointments. He was the only person I knew living with MG, and he seemed to be living a pretty normal life.

What has changed about your life since your myasthenia gravis diagnosis, and what has stayed the same?

For the most part, my life is still pretty normal. Some things stayed the same, like I’m working full time and working out five or six times a week, although I had to slowly build back up to using heavier weights. I have to be careful about not pushing myself too hard, and I worked with my doctor to figure out what exercises were right for me. I know not everyone with MG can do as much as I have been able to do.

But some things certainly did change. I had to start cutting back on social outings. My friends noticed, but when I explained it to them, they were understanding. And I need more sleep than I did before. For me, it’s really been about finding the right balance of what I want to do and what I need to do to take care of my body.

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“I had no idea there was a whole community out there for people with MG.”

Fitness is obviously a passion of yours. What was your routine like before and after your diagnosis?

Before, I had a routine that I followed, and I liked to push myself to lift the heaviest weights possible. But after my diagnosis, I had to back down on the heavy weights. I still worked out with the same mental intensity, but I wasn’t pushing to get to those big weights. Over time, as I learned how MG affects me, I’ve been able to find ways to push myself again. Because working out is such an important part of my life, I know my body well, so I know when I need time to recover. Maybe the biggest change in my fitness is actually psychological. Before I was diagnosed, I tried to push through everything. Now, I’m more in tune with my body.

It’s really been about finding the right balance of what I want to do and what I need to do to take care of my body.

What challenges did you face while continuing to work? Did you have to set new expectations or modify your workload or schedule?

I’m very lucky to have the job that I do because I was able to modify my schedule. I worked with my manager when my symptoms were really bad. I would go in when I could. My manager and coworkers knew that I would do all that I could, so they were understanding when I needed to come in late or miss a day. When I had a myasthenia gravis–related surgery, I took some time off to recover and find my new balance. When I was ready to come back, my position was waiting for me.

I started slow, only working a few days a week. But soon, I was feeling better and was able to work more. Eventually, I was working full time again and performing as well as I was before any of my MG symptoms started. I am fortunate that everyone was so understanding. For me, I think it helped that I was open about what was happening to me. It felt like a lot of the stress I was feeling was lifted off me.

Has your approach to wellness and nutrition changed since being diagnosed with MG?

Since MG, I’ve learned how important my mental health is. I read about mental health and how a chronic condition can affect it. I try to make decisions that will benefit me mentally and physically, such as working on ways that will help me minimize stress in my life.

As far as nutrition goes, it was already pretty solid. I read about what kinds of foods are recommended for energy throughout the day and try to incorporate them into my diet. I throw them all in a shake and have that for breakfast once or twice a week.

Beyond wellness and nutrition, what other things have you learned to make life with MG a little more manageable?

You have to be aware of how you expend your energy. That’s huge. It helped me realize where I was using my energy. By paying attention to what you’re doing and how you feel afterward, you learn how different parts of your life affect your energy. I examined my life in terms of where and how I spent my energy, and I asked myself, with almost everything, "Was it worth it?" If it was, I continued to do it. If it wasn’t, I stopped.

I also learned how important it is to have someone you can talk to about what’s happening. When I kept everything to myself, it felt like it was all on me. When I opened up, it felt like the weight was off me. I tell others to find a close friend or family member who they can talk to and who can be there for them.

By paying attention to what you’re doing and how you feel afterward, you learn how different parts of your life affect your energy.

Speaking of support, where do you turn when you need it?

I have two friends who are close whom I can talk to. I’m really open with them. Sometimes, I just need them to listen. But sometimes, I get their thoughts on what I’m going through. Also, I talk to all three of my sisters. They’re really good at listening to me and helping me feel supported.

I hadn’t really talked to anyone with MG beside my ex-girlfriend’s father until I went to my first MG walk. I had no idea there was a whole community out there for people with MG. Really, the important thing is to find support. You don’t have to go through this on your own.

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