Speaking Up for Myasthenia Gravis: A Patient Interview with Meridith

Sharing our experiences can help us all feel less alone while navigating life with a chronic condition such as myasthenia gravis. Patient Advocate Meridith shares a bit of her journey about life with MG:

When you were first diagnosed?

My name is Meridith O’Connor, and I am from St. Louis, Missouri. I was diagnosed with myasthenia gravis (MG) in 2005 at the age of 13.

When did you first notice symptoms?

Ironically, I experienced the typical symptoms one usually sees when making an MG diagnosis, yet it took more than 2 long, painful years for me to actually receive one. The weakness and fatigue began in my eyes; I dealt with droopy eyelids, double vision, and then the disease continued to progress slowly throughout my entire body over time. I had difficulty chewing, swallowing, smiling, speaking, and weakness in my neck and limbs. The majority of healthcare providers I visited thought it was either all in my head, I was making it up, or diagnosed me with other things such as allergies or anxiety. My pediatrician referred me to a neurologist, and with a simple blood test and thorough neurological examination, I was finally diagnosed with myasthenia gravis.

How has MG impacted your life?

While MG does not define me, it has most definitely changed the trajectory of my life. I am not ashamed of that; it is just the reality of having a chronic illness that invades every part of you and how you live. Whether it is something as small as needing help with grocery shopping, to something as significant as requiring an employer to accommodate my unique needs, my chronic illness has forced me to look at every situation with new eyes and learn how to navigate each of them in an innovative way. MG does not dictate my life, but I must consider the role it plays in almost everything I do. That has not always been the easiest pill to swallow (no pun intended), but with time and adaptations, you learn to accept it and not fight it.

What do you wish you knew at diagnosis?

I knew life with myasthenia was going to be a difficult one, but I was not prepared for the depth of complications it would present in every single thing I did or felt. There is no such thing as a simple decision for me anymore. Everything I participate in must be weighed with myasthenia in mind, and that wears on you after a while. MG has the ability to make the most straightforward things complex. Sometimes I wish I did not have to “think” and could just “do.” Having to live in constant consideration of something that has the potential but no guarantee to impact you negatively is utterly exhausting, and I was unaware of the gravity that would have on my mind.

Any advice for those who are struggling?

Learn and practice patience. MG is quite literally a “fatigable” disease, therefore “pushing through” is simply not an option. People will tell you to “put your health first,” but they do not realize that we live in a society that does not actually value this practice. When you practice patience (with yourself and others), you give yourself permission to heal.

What is the most difficult aspect of MG?

Symptoms aside, the most difficult aspects of having myasthenia gravis are its tendencies to be unpredictable and sometimes invisible. For example, I can go from feeling/looking perfectly fine 1 hour to feeling/looking absolutely depleted the next. Such a drastic change in how I look and feel causes frustration not only on my end but also causes other people to question my integrity and reality. I wish I could say I was immune to the judgment, but it hurts when others make unfounded speculations, especially regarding something I have no control over.

What helps you cope with your diagnosis?

First and foremost, my family and partner of 5 years are the people that have helped me cope with my MG the most. While they will never be able to fully understand what it feels like to have MG, they know what it is like to love someone with MG, and quite frankly, I think that can be even more challenging (at times) than actually being the “sick one.” I can always count on my loved ones to lend a helping hand, wipe away my tears, make me laugh, and help me have perspective when this disease really gets me down. I would not be where I am today if it was not for them, and I truly mean that. As 1 physician I work with once told me, “This is a family disease,” meaning it affects not just the patient but everyone around them, and that could not be more accurate. Having a support system is fundamental in the healing process, and I am incredibly grateful for mine.

In addition to my support system, I believe my passion for writing and the people who read and react to my advocacy work have both been pivotal in learning to live with MG. There is something incredibly powerful about taking a thought or encounter I have had with this illness, putting it to paper, and seeing the impact my words and lived experience can have on someone else. Giving my disease a purpose rather than allowing it to just tear my body down has been an incredibly profound and therapeutic experience for me.

What goals have you accomplished in spite of MG?

In spite of my diagnosis with myasthenia gravis, I have been able to fulfill dreams and goals that many did not think were possible. I graduated high school, went to college to study psychology, earned my master’s degree in social work, started my own business, and, most importantly, have taken my experience with chronic illness and used it for good in this world.

Any additional comments?

There is more to life than myasthenia gravis. Yes, it has a way of spinning its web into almost every part of your existence, but instead of allowing it to define you, choose to define it and what it means to you.