The physical body is not the only thing that drastically changes when diagnosed with myasthenia gravis. Our relationships and dynamics, activities of daily living, and careers can all be impacted by MG, requiring us to think of new ways to approach life. MGA community member Sarah Bolton faced challenges in her original career when her MG worsened, however, she refused to let that stop her from using her creativity. Now a lifestyle coach, Sarah gives us a fresh perspective on what it means to live with MG.
Meet Sarah:
What is your name?
SB: My name is Sarah Bolton, and many folks know me as “Bolty.” With having several friends, classmates, colleagues, (and just overall people in the world) also named Sara(h), “Bolty” became a way to distinguish myself from the rest. And I genuinely like the name “Bolty,” so there’s that.
Where are you from?
SB: I grew up in Southern California (in the Orange County area). For those of you “Arrested Development” fans, you may know it as “The OC” (don’t call it that). I originally moved to San Diego for college (Aztecs!), and after graduation, I continued living there for most of my adult life (minus the year that I lived in Las Vegas and up until this summer). Now, having spent this summer out in Kansas City, MO, I have this newfound appreciation for the weather (a constant 75 degrees) in Southern California and am beginning to understand the higher cost of living (“the Paradise Tax”). While living in the midwest has been a fun, new adventure, I look forward to being back in “America’s Finest City,” the place that I call “home.”
What is your role in the MG community?
SB: I believe that the language we use impacts our experience of life. So instead of saying, “I suffer from MG,” I say, “I live with MG.” I find it to be more uplifting. Similarly, I heard someone say that they were not “disabled,” but rather “differently-abled.” Another friend who lives with MS says “endorsement” instead of “diagnosis.” I think these are all cool and clever ways to phrase what we each are experiencing. And I have no judgments about how others relate to themselves and their health circumstances, so long as they are empowered.
So to answer your question, I live with MG and am part of the MG community! I also have felt called to share my story with others. Whether or not that makes me an advocate, I’m not sure. What I do know is that I will continue to speak up and share my experiences. I will also lead more conversations about MG and invisible/chronic illness in general.
Are you able to work? If so, what do you do for a living? Or, how do you spend your free time?
SB: Yes, and it looks differently than what I had originally “planned” to do with my life. Prior to MG, I’d worked in the hospitality industry for many years and had also gone back to school and gotten my cosmetology license. While in beauty school, I started a business working as a face painter and party entertainer (you can see some of my work on IG: @boltyfx) at children’s birthday parties, festivals, and events (since you don’t need a cosmetology license for this). After I became licensed, I quit my job at the restaurant, continued my face painting gigs on the weekends, and worked in a couple of different salons and spas. However, with my MG symptoms worsening, it became more and more difficult to get my work done. My hands were unreliable, and even with my medication, I still experienced frequent flares, especially in the afternoons or after doing any amount of repetitive movements. It became clear that the skills that I’d worked hard to develop were not going to sustain me long-term now that I was living with MG. I’d need to get creative and shift in a new direction.
I enrolled in a year-long training to become a life and leadership coach. Prior to this, I, myself, had worked with a coach, and I’d seen firsthand the impact coaching had had on my life. What I saw for myself in becoming a coach was being able to have that same, positive impact on other people. Synchronistically enough, coaching was also compatible with my physical needs and limitations. While I would be responsible for generating my own clients and running my own business, the skills that I would develop as a coach would require much less of my hands and instead more listening with my ears (something I CAN do with MG).
It is said that hairdressers are “licensed to touch,” and as a life coach, I am able to “touch” people’s hearts and lives. In my current coaching practice, I support my clients 1:1 and also in a group setting. About a month ago, I even started a group for folks with MG. It’s similar to traditional support groups except that we don’t spend a lot of time talking about medications, treatments, or other medical things. Instead, it’s about coming to terms with “what is” with our bodies and our health challenges, while also designing our lives so that we can thrive, regardless of our circumstances or “limitations.”
Additionally, I have started writing a book about my own personal journey with MG as well as stories from other folks living with invisible illnesses. I plan to have it completed by the spring of 2022.
How long have you been living with MG?
SB: I was diagnosed in May of 2019 (so about 2 ½ years ago), and I’d been experiencing symptoms 4 years prior to my actual diagnosis. So it’s been a little over 6 years of these bizarre things happening with my body.
Prior to being diagnosed, had you ever heard of MG?
SB: No, but as soon as my doctor diagnosed me and I read the list of symptoms for MG, it was SPOT ON with what I was experiencing.
How does MG currently affect you today? (symptoms/treatments/etc.)
SB: With each day comes its challenges, and I never know how severe my symptoms will be. While I’m grateful that my body responds well to Mestinon, a pill I take 6x/day to help my muscles function better, there is still currently no “cure” for MG. Some days, it is difficult to get out of bed in the morning. Other days, my biggest problems may be my eye doing “the thing” (drooping/ptosis) or my hands/arms not working. Sometimes I have trouble smiling fully and my speech becomes slurred. And on really bad days, I’ve had trouble walking/standing/going up stairs due to my legs turning all limp and Jello-ey. I am grateful that I have not experienced a myasthenic crisis nor have I needed to be hospitalized because of MG. And I will say that I am present to the impact of MG on my life every single day.
While my neurologist has offered some other, more aggressive treatment options as of late, I am hesitant to start them. I worry about being on immunosuppressants during this Covid-19 pandemic. Lately, I have been reading and learning about alternative treatments and healing modalities that take a holistic approach (body, mind, and spirit) when it comes to total health and well-being. I’m hopeful that I can find solutions that will support me in living my best life and maybe even put me into remission. And with all the ontological work I’ve done, I know that whatever life throws my way (MG included), I get to choose how I BE about it all. (Ontology = the study of the nature of “being.”) I choose to look for opportunities and silver linings despite the challenges and circumstances.
In your opinion, what is the biggest need you see in the MG community?
SB: What I see among many people with chronic/invisible illnesses is a lack of financial resources. Because our healthcare system in the United States is largely tied with employment, being diagnosed with a medical condition can be financially devastating. You either lose your job (and with that your healthcare coverage) because you’re too sick to work OR you feel forced to keep working (so you can keep your healthcare coverage) which often means suffering through and working when you’re sick or unable to properly do your job (lose/lose).
I’ve personally experienced immense financial hardship with not being able to do the work I was trained to do, and I’m fortunate/privileged to have help from family to get me by while I reinvent my career (not everyone has this). While some may qualify for government-funded disability programs, many of these programs are, in my opinion, flawed and only replace a small percentage of your previous income and can take months to actually kick in. In addition, these programs disincentivize people from generating any additional income because doing so would disqualify them from receiving any benefits. As a result, we see people living on $1000/month (way below the poverty level). In summation, I see an opportunity to provide better financial support for folks in need as well as a healthcare system that isn’t linked to employment. If everyone had access to healthcare, I see that more folks (especially those with chronic illnesses/pre-existing conditions) would find creative ways to generate income (non-traditional jobs and businesses) and still have their basic needs met (healthcare).
I also see a need for more targeted treatments. Since MG is considered a rare disease (among 7,000 other rare diseases), there is not as much funding allocated for developing new treatments as there is for other, more well-known diseases/disorders (heart disease, cancer, diabetes, etc.), While MG is considered a rare disease, it’s not as “rare” as you would think. There are estimated to be about 65,000 folks in the U.S. who’ve been diagnosed and are living with MG. This is just in the U.S.! Globally, there are many more who would also benefit from new treatment options.
How has myasthenia gravis impacted your own life (other than being physically symptomatic)?
SB: I often catch myself feeling like a flake for canceling plans at the last minute due to a sudden episode of weakness or fatigue. It’s both exhausting and frustrating having to explain myself and why I can’t always do the things I used to be able to do. Additionally, it can sometimes feel like I am being a burden on people around me when I have to ask for help. And, while my partner, my family, and my friends want to support me, they do not always fully understand HOW to support me. I have gotten better at asking for what I need and sharing with them specific things that are supportive. Being a bit of a stubborn and independent person myself, I’ve also had to learn to allow and receive support from others.
I recently started seeing a therapist again to help me work through a lot of pent-up emotions I’d been holding onto. I’ve been grieving the loss of the life I used to have and coming to terms with the fact that my life might look differently than I “planned.” Therapy, as well as coaching, have been incredibly supportive on my journey, and I highly recommend anyone who has received a diagnosis like MG talk to people who can help guide you through these changes.
What have you learned from having an MG diagnosis? Has it taught you anything?
SB: I now have so much more compassion and empathy for people with disabilities, especially invisible illnesses. If we see someone in a wheelchair, we are usually accepting of their limitations. And yet, when someone with an invisible illness says they are in pain, they are often met with, “but you don’t look sick.”
Additionally, MG has moved me to speak up and bring awareness to the issues affecting folks with chronic/invisible illnesses. The CDC estimates that over 25% of the U.S. is living with a chronic condition (This was from a 2012 report, and the latest statistics are a bit more than this)! I believe that part of my purpose on this earth is to use my voice to enact positive changes. Supporting folks through health challenges and speaking up about issues impacting these communities is really important to me. I’ve learned that many times there are little to no treatment options available or accessible to people with rare diseases.
Is there anything else you would like to add?
SB: If any of my story resonated with you and you’d like to connect, feel free to drop me an email: bolty555@gmail.com or you can find me on Instagram: www.instagram.com/bolty555
Thank you, Meridith and Allison, and the rest of the team at the MGA for the work you’re doing. I’m so grateful for you, and thank you for including me in the Digest this month! <3