Redesigning Dreams: Sarah Bolton Shares Her Journey with MG and the Inspiration Behind Designing Our Lives With MG

Living with myasthenia gravis (MG) often means navigating a journey filled with unexpected challenges, unanswered questions, and the search for hope. For Sarah, that journey began more than a decade ago with subtle but alarming symptoms that made everyday tasks nearly impossible. After years of uncertainty, she received her MG diagnosis at just 29 years old. What followed was not only an adjustment to life with a rare disease but also a transformation in how she saw herself, her purpose, and the possibilities ahead. Today, Sarah shares her story and how it inspired her to create Designing Our Lives with MG, a unique coaching program that empowers others in the MG community to live with greater intention, resilience, and hope.

What’s your connection to Myasthenia Gravis?

It’s been about 10 years since I began experiencing strange and unusual symptoms. There were little things like the “drooping” in my eyelid or finding it difficult to grip the knob to turn on the washing machine. I began to experience challenges lifting my arms above my head for more than a few seconds to comb or style my hair (something I had been able to do for many years prior to this). People close to me noticed that I wasn’t able to smile my usual smile (even during happy moments when I normally would be smiling). I also began having challenges with my speaking. My speech would become slurred and my voice sounded very nasally after talking at length. I would often find myself gasping for air and feeling out of breath after running, dancing, or sometimes even just walking. Then there was the blurred and double vision, where it seemed the only thing to do was to rest my eyes.

At work, there were some instances where I dropped trays of food at the Italian restaurant where I was a waitress, and other times when I was unable to open bottles of wine for the guests at my tables (something I’d been able to do for years previously).

I’d also graduated from cosmetology school and had begun my career working as a hairstylist behind-the-chair. I vividly remember an experience I had during a blow-drying class at the salon when I became unable to continue holding the blow dryer up or pulling the round brush through my client’s hair. My hands felt heavy as if I was carrying bags of bricks, and I had to excuse myself and went home “sick” that day. I felt confused, embarrassed, afraid, and alone.

After four years of experiencing these various symptoms, going to see multiple different doctors, and seeking answers as to what was happening with my body, I was diagnosed with Myasthenia Gravis. I had never heard of MG prior to this, and at 29 years old, this diagnosis brought with it mixed emotions, thoughts, and feelings.

What was it like having a diagnosis?

Having an official diagnosis was a relief and felt very validating, in many ways. Finally there was “proof” that this was not “all in my head” like some had suggested (ugh). Being undiagnosed for so long had taken a toll on my mental health and really had me questioning myself. Having a clear diagnosis provided me with an explanation of what I was experiencing and also allowed me to move forward with medications and treatments.

What has been the most challenging part for you?

The most challenging part for me was the identity shift and coming to terms with this new experience of life as a person living with a disability/rare disEASE. I grew up living a very privileged life as an able-bodied person. It never occurred to me that something like this could happen to me. I’ve needed to practice a ton of acceptance, patience, and self-compassion.

What’s something that your doctor didn’t prepare you for?

I wasn’t prepared for how many areas of my life would be affected by this diagnosis. When you are not physically well, it can affect your relationships, your career, your financial status, your mental and emotional health, your day-to-day life, and even your plans for the future.

Coaching

How did you become a life coach?

After it became evident that working behind-the-chair at a salon or waiting tables at a restaurant were not long-term, sustainable career paths for me (given the physical demands that my body was no longer equipped to handle with MG), I began to explore alternative roles/jobs that I could do. I had to get creative and resourceful. I’d previously had the opportunity to work with a life coach, and I received so much value from those conversations. I also knew that I loved talking to people about their lives and already did quite a bit of that as a hairstylist and a bartender.

So, I opted to pursue further training to become a life coach myself and earned my ACC credential through the International Coach Federation. Now instead of my hands being my “money makers,” it’s my ears that do most of the “heavy lifting” as I mindfully listen in conversations I have with my clients and then reflect back what I notice.

What is ontological coaching?

Ontology (NOT to be confused with oncology) is “the study of the nature of BEing.” This style of coaching focuses first and foremost on how we are BEing (before the “doing” part). It looks at how our language, emotions, and body shape the way we see the world and what we believe is possible.

I have incorporated this ontological style of coaching in the “Designing Our Lives with Myasthenia Gravis” program because we often can’t control or change the difficult or unwanted circumstances in our lives. We can, however, shift our perspective, change the way we are relating to our circumstances, and choose how we will BE in the face of our challenges.

To quote one of my favorite teachers, Dr. Wayne Dyer:

“When you change the way you look at things, the things you look at change.”

What inspired you to create Designing Our Lives with MG?

During the Covid-19 pandemic, I got connected with the Myasthenia Gravis Association and attended several of the Virtual Monthly Meetups as well as some support groups (also virtual). Everything had shifted from in-person to online at that time due to the circumstances, which worked well for me being from California. I met Allison Foss, the Executive Director af the MGA, and many other wonderful people who had also been affected by Myasthenia Gravis.

It was at this time that I received a “download” to create this offering. I could picture myself leading a virtual group where we would connect and share about our experiences living with MG.I really valued the friendships and support I’d seen in support groups, and I also wanted to incorporate some of the forward-focused framework that I’d seen coaching can provide.

It was important to Allison that the group be offered at no cost to participants, in line with the MGA’s mission. She encouraged me to put together a proposal of what I was envisioning, and thanks to support from our sponsors (Alexion, argenx, and UCB), we have been able to offer this 6-month program twice since its inception in 2024.

How might this group be helpful for someone feeling “stuck” or limited by their circumstances (e.g. living with Myasthenia Gravis)?

As someone who’s been living with MG for a number of years now, I notice it can be easy to get caught in the “poop soup” that has me feeling victimized by my circumstances. What has really helped me to continue moving forward (despite all the challenges) is this idea that I can “design my life” in line with my core values, my abilities, my needs, and my desires, regardless of what anyone else thinks I “should” do or how I “should” live. While we cannot control all of the circumstances in our lives, we do have the power to CHOOSE how and who we will BE about it all. We can continue on letting life happen “to us,” or we can intentionally and mindfully design our lives.

Why focus on “designing” our lives—what does that mean for someone living with MG?

“Designing Our Lives” means that we consciously choose how we want to live — even within limitations. It means asking: What do I care about? Who do I want to be? How can I honor my body while still creating meaning, joy, and possibility? Instead of reacting, you’re designing. For someone with MG, that might look like reimagining work to fit your energy, cultivating relationships that truly nourish you, or designing daily practices that support both your health and your spirit.

When will “Designing Our Lives with Myasthenia Gravis” be offered again?

The next program will kick off in the Spring of 2026. To apply to to be a participant in that cohort, please submit an application HERE. The program is capped at 25 people to provide an engaging and intimate experience.

Questions?

Send an email to: designingourliveswithMG@gmail.com

Application Link: https://docs.google.com/forms/d/e/1FAIpQLSdsHWYcXT4ycjfFTWyqDTOxjqmfV8adgOVQkWMtevh7vOsVhA/viewform?usp=header

Testimonials

Here’s what some of the participants shared about their experience in the group:

The group helped me deal w my fatigue/energy challenge. Helped me have the courage.

This group was really wonderful to be able to see how others live a "normal " life despite the adversities. Being able to see how others are kind and supportive to strangers was probably the most meaningful thing from this group. This diagnosis is so isolating and being able to connect was so powerful.

I am (fairly) newly diagnosed with MG. This was my first experience connecting with others who have MG. I found it helpful when others were able to articulate something related to their circumstance that I, too, could relate to but had not been able to put it into words.

Knowing that, you are not alone, is oddly a comfort, even though we are all different stages of our journey. It was great to “sign-in” and see everyone weekly!

I enjoyed connecting with others in my community directly.

I love that the group is for those with mg and ran by someone with mg. When I talk about challenges, I know everyone understands, including Sarah. This is my second time in this group, and I hope I'll be in it a third. It has really helped me to see that my dreams are not dead. I may have to change how I do things, but my dreams are still alive, and I can achieve them. I have so much more hope than I did before, and I'm excited to start this next stage of my life.

It changed my view on this disease. Hearing others struggle lifted the isolation. Others seemed genuinely concerned about me as well.

It helped me cope with how I was feeling at work I began to work on my insecurities with that and has helped me build confidence again and continue on.

Having a community to talk to and receive support from is so validating and helpful. It keeps from going down a wrong path.

Program Objectives

• Coming to terms with our diagnosis and discovering the willingness to transform our relationship to our circumstances

• Acknowledging the impact our disEASE has on various aspects of our daily life and our relationships

• Creating habits and structures that help us thrive, not just survive

• Providing a positive, safe, uplifting, environment to engage and connect with others who understand the challenges of living with MG

• Developing healthy confidence and self-advocacy so that we are able to get our needs met more effectively

• Finding our own answers within (through a coaching framework) rather than a prescriptive or consultative approach

• Several live group sessions/month and ongoing (for six months) to ensure continued connectivity and engagement

Note: This is a coaching group distinct from traditional support groups, classes, courses, or other educational programs. The International Coach Federation defines coaching as: “partnering with clients in a thought-provoking and creative process that inspires them to maximize their personal and professional potential."

What is Designing Our Lives With MG?

• This coaching group will be led by a fellow peer/individual living with MG who is also a credentialed life coach, bringing a unique approach and perspective.

• The virtual group format allows for accessibility and flexibility.

• The group (up to 25 participants) will run from February 2026 - July 2026 (6 months) and will meet (live/virtually) three times/month (75 minutes). On the weeks we don’t meet live, participants will have a practice or project they will be working on asynchronously and will submit a check-in sheet to stay engaged.

• All interested participants (patients with MG) will submit an application which will be reviewed by the coach to ensure that coaching is appropriate for each participant.

• A required confidentiality agreement must be signed by all participants (before receiving the virtual meeting link) to maintain privacy/trust and keep the container a safe space that allows for authentic sharing within the group.

• Participants will complete weekly check-in sheets before our live group sessions and will have an opportunity to submit any requests for support.

• Intake, surveys, assessments, and feedback forms will be distributed regularly to participants to measure progress, results, and milestones reached.

• An optional chat thread/online forum will be available for participants who wish to stay connected between live group sessions.

• The coach will hold regularly scheduled office hours for additional spot coaching and support between meetings.

• Participants will leave the live group sessions with a sense of direction and purpose that allows for forward progress, instead of dwelling or ruminating about their circumstances.

• Practical tools and practices will be generated during the live group sessions so that participants can begin applying and integrating what they learned into their daily lives.

• A curated list of resources will be provided to participants for further exploration of themes and topics we’ve discussed in our live group sessions.