Mihoko’s story

Myasthenia Gravis (MG) is a disease resulting in muscle weakness

MG is a disease in which antibodies destroy receptors for the signals sent between the nerves and muscles, resulting in muscle weakness. The muscles of the eyes and limbs grow tired quickly through movement and lose their strength, causing visual problems, including drooping eyelids and double vision.

We interviewed Ms. Mihoko Suzuki, a resident of Miyagi Prefecture, about her MG experience. She talked about her life fighting disease, the doctors and friends who saved her, how she manages her everyday life and work, and her hopes for the future.

“I didn’t even know what the next day would bring after being diagnosed with MG” 

Ms. Suzuki, now 52 years old (at the time of the interview), told us that her disease was diagnosed as MG in 2008, when she was in her 30s.

“I felt heaviness in my body when I travelled a long distance for a relative’s wedding. I also felt my eyelids drooping and found difficulty in swallowing food. I thought I was just tired because I was very busy at work at the time and wasn’t getting enough sleep. But a little later, when I was driving my car, I started to see two traffic signals or two roads. That’s when I thought: ‘There’s something wrong with me,’ so I decided to see a doctor.”

“When I started receiving treatment, it was hard for me not knowing when I would lose my motor functions, or even what tomorrow might bring.”

After undergoing MRI scans at the department of neurosurgery, Ms. Suzuki was referred to a university hospital with a suspected disease, and was diagnosed with MG. She underwent thymectomy and began medical treatment.

“When I started receiving treatment, it was hard for me not knowing when I would lose my motor functions, or even what tomorrow might bring. It was also difficult for me to make plans to meet with my friends, and I could not commit to completing tasks at work. I was in an unstable state of mind, as if I were walking down a narrow path and somehow trying to make it to tomorrow.”

Ms. Suzuki had worked as a permanent employee at a company operating restaurants for a long time, and had been promoted to the position of director. However, her body could no longer move as easily as before. Despite the concerns of people around her, she managed to keep working, but was reaching her limits both physically and mentally.

With no idea of what the future would hold, clutching at straws she continued medical treatment for a total of five years. However, her condition worsened, and she began to doubt whether she would be able to survive until tomorrow.

“One day, I experienced difficulty breathing. When I talked to my doctor at that time about changing my medication, he yelled at me: ‘Why can’t you just follow my instructions?’ Shocked by his words, I consulted a patient group I found through an internet search.

I was in such a state that I could not move on my own and could barely go to the bathroom. I was bedridden and it was all I could do every day just to gaze at the ceiling. I felt so alone that I even thought about dying. I spent my days worrying that I would stop breathing, but the patient group I contacted helped me transfer to another hospital. I’m truly thankful to this group for saving my life.”

Fortunately, at the hospital, she met a doctor who changed her life.

A doctor who always reaches out to patients accepted my desire to adjust my treatment so I could go back to work. I came to think: ‘This doctor is helping me stay alive!’

I also met other patients with MG at the hospital. We were able to open up to each other right away because we shared MG in common. Meeting other MG patients who had come through the same situation and being able to talk with them helped me to become more positive, and start thinking that ‘I want to do something.’”

With the slogan: “We are now in a dark tunnel, but one day we will pass through the tunnel and morning will surely come,” they encouraged each other. “There’s something fun even in the dark tunnel. Never give up hope.”

“I thought seriously about how to live with MG”

Ms. Suzuki was able to overcome her mental and physical suffering with the help of medical care and her friends. Despite the limitations her illness imposes, she is living her life by figuring out the best way to handle her situation.

“In my daily life, I cannot cook at all. I live by myself, so I buy precooked food or ask my family to send me food. I can’t go shopping frequently, so I buy things when I go out on an errand or use home delivery services.

Since I cannot hold buttons between my fingers when changing clothes, I wear mainly pullovers and shawls. In addition, I don’t use an electric toothbrush because according to my doctor it could chip my teeth due to the impact of the treatment. Everything takes time, so I get up early to make sure I have enough time to do everything.

I have a nasal voice, so I speak slowly so that other people can hear me more clearly. I also find it easier to see things if I wear an eye patch and look with one eye, or If I press my eyeballs with my fingers over the eyelids to adjust my angle of view.”

“People around me probably didn’t know how to communicate with me, because I was sometimes expressionless because of my MG symptoms, not because I was upset.”

Ms. Suzuki left the company where she had worked for many years in 2019. She says that the death of her father made her think seriously about how her life should be and how to live with MG.

She changed her career and became a career consultant – a job where she can work from any place, at any time, or any day, use her expertise and experience, and for which there is a need in society, with the aim of being helpful and useful to others. How does she manage in the workplace as she is not able to move as freely as others?

“I entrust other people with detailed checks and tasks that require continuous talking and moving, and I take charge of the specialized parts I am capable of doing.

When I feel that it is dangerous for my body to continue working, I try to rest and not overdo things. However, there are times when I can’t take a day off due to work-related reasons, and in such cases I will take a rest at another time.

Sometimes it’s difficult for me to make people at work understand my current condition. They ask me: ‘Can I ask you to do this?’ or ‘Can you do this?’ However, while there are days when I cannot read due to my double vision or even pronounce words, my symptoms do not present in the same way every day. Therefore, I ask my colleagues: ‘Today I will do this, so can I ask you to do XX?’”

“Telling my family that MG is part of ‘my personality’ made me feel better about myself.”

For those who do not have MG, it may be difficult to imagine not being able to control your own symptoms. What does Ms. Suzuki pay attention to when communicating with someone?

“People around me probably didn’t know how to communicate with me, because I was sometimes expressionless because of my MG symptoms, not because I was upset. They tried to be considerate of me before, and I sometimes felt stressed when they said things to me like: ‘Let’s give it try!’

I once gave my family a comic book ‘I’m MG. Tohoho Diary of MG patient’ written by Sugako Watanabe. I think they now understood my illness a little better than they used to, but I knew it would be difficult for them to fully understand it. When I told them that MG is part of my personality, I found myself feeling more at ease than before.”

Ms. Suzuki also tells people she meets for the first time about her disease without hiding it. She just tells them: ‘My expressionless face is not because I am offended’ and ‘I may show these symptoms’. When her symptoms actually appear, she tells them, ‘This is one of the symptoms of MG.’

“I wanted a doctor to treat me as a human being with feelings more than just as a patient.”

I realized the importance of conveying ‘my’ intentions to a doctor. In addition, she has devised ways of communicating with her doctor.

“To tell the truth, I was discouraged when my doctor refused to accept my suggestions at first. But my friends with MG taught me that I need to be more specific, so I tried to clearly convey my intentions to my doctor through trial and error.

When I told my doctor that I wanted to do this every other day or every two days in order to be more active, he understood my decision and changed my prescription. Of course, treatment regimens are determined by a doctor, but I think it is important to clearly express your wishes and intentions to your doctor.

Until then, I was always asking my doctor: ‘What should I do?’ and ‘I want to do this, but am I wrong?’ Since then, however, I have been able to express myself more clearly, saying things like ‘I want to do this!’

“I feel happy after changing my living environment, perspective, and mindset”

Ms. Suzuki says she is now able to work four to five days a week. In addition to being a career consultant, she also holds career support seminars for job seekers, accompanies people on company visits, and provides lectures at universities. Does she have anything that she would like to do in the future?

“I want to continue my current job. I can only attend a career support seminar for half a day now, but before long, I would like to hold the seminar for an entire day. I also want to improve corporate working conditions for employees who are facing difficult circumstances, so I decided to become self-employed by the end of 2023 and start working as a career consultant for companies.

In my private life, I would like to go on an overnight trip, not a day trip. I think that if I could go to the Oirase Gorge in Aomori Prefecture and enjoy canoeing and walking in the forest with my dog and friends there, I would ‘feel alive’ with every part of my body, being surrounded by nature.

Above all, I want to become a role model for other MG patients. We cannot recover completely, and face challenges in terms of mental health and our appearance, but we can figure out ways and means to live with the disease. I want to encourage others by sharing my experience.”

In conclusion, we asked her what she would like to tell MG patients.

“Please ask your doctor anything that concerns you about your various symptoms. For example, if you are concerned about adverse reactions caused by your medication, you should ask your doctor without giving up, no matter how small the symptoms may be.

Many MG patients may think that their future is uncertain because of their disease. Although we can’t change reality, I think it is important for all of us to change our current living environment, perspective, and mindset and try to get to a place where we can achieve sufficient happiness to alleviate some of the suffering and hardship we may experience. It’s not easy, but you can try it at any time you like. If you are facing a tough time, why don’t you contact me as your friend? Let’s go forward together without giving up!”

Ms. Suzuki was full of positive reassurance in this interview. We are sure that there are people out there who will be encouraged by her story and warm message.