Speaking Up for Myasthenia Gravis: A Patient Interview with Claire

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

Tell us about yourself

My name is Claire, and I have been married to a military pilot for 25 years. Jason and I have lived in New Hampshire for the last 20 years. Prior to 2000, we lived all over the country, including New Jersey, Pennsylvania, Florida, Texas, Mississippi, Washington state, Massachusetts, and Oklahoma.

We also traveled extensively in Europe while he was stationed in Germany. We have 2 children, Katherine and Thomas, and 2 big, goofy dogs, Rosie and Bean.

When you were diagnosed?

I was diagnosed way back in March of 1995 while I was a senior at Villanova University in Pennsylvania, majoring in education.

What were your first symptoms?

I was a very busy senior, getting ready to graduate and begin my new life with my fiance after graduation. As an education major, I was in the middle of my student teaching, working as a full-time teacher while still attending classes.

I was the president of the ski club and the vice-president of the glee club, all while planning our wedding and volunteering in schools in South Philly.

While I was certainly very busy, I did not feel under tremendous pressure, as I loved all that I was doing. One day, I developed an ulcer in my mouth, so clearly, even though I did not feel stressed, I was.

I went to see a dentist since I thought the ulcer was a wisdom tooth trying to come in. He recommended numbing cream. That evening, Jason and I went to our favorite pizza place. I noticed that I was having a hard time chewing. We laughed when I started slurring, thinking that the cream had anesthetized my whole mouth.

When I woke up the next morning, the “side effect” had disappeared. By mid-afternoon, it was back, which was strange as I did not use the medicine that day. My roommates and I all laughed about it as I appeared to be drunk, but I had not had anything to drink. I was having trouble walking, talking, chewing, and swallowing.

As I was teaching the next day, practically spitting on the students as I struggled to get the words out and holding my floppy head up with my hand, my cooperating teacher called me into the hall as he saw I was having a hard time catching my breath.

Jason brought me straight to the hospital, where an intern said that my tongue, which we thought was swollen, was actually not swollen but instead was not moving. I was given a full neurological exam, and images were taken to rule out the possibility of a stroke. We all agreed I was safe to return to my dorm, and I made an appointment with a local neurologist the next day. March 19, 1995, 2 pm: my life changed forever.

I told the young doctor I saw that I should probably be seeing a psychiatrist rather than a neurologist because I had experienced really strange things that would randomly go wrong with my body since I was in middle school. Many members of my family suspected I was a hypochondriac.

He chuckled and told me he was pretty sure he knew what was going on. After giving me a Tensilon test, where my heart raced as it never had before, the doctor confirmed the diagnosis of myasthenia gravis.

Unfortunately, I was allergic to the first medicine I was given, Mestinon. Within a week of being diagnosed, I was admitted to The Hospital of the University of Pennsylvania, where I began plasmapheresis and prednisone. It has been a long, winding health journey since then.

My family and I try to fight this disease with love, light, and laughter, but there have been some very tough and frightening times. I feel blessed to be surrounded by such supportive, caring family members and friends.

How has MG impacted your life?

Our family tries to not define itself by MG. It is a huge part of who I am and who we are as a family, but that is not everything. I try to get a walk in or do something physical in the morning before I run out of energy on my weaker days.

We try to plan our trips, hikes, skiing for the weeks immediately following my Rituximab infusions, when my strength is usually better. I was 21 when I was diagnosed and I am 47 now, so the MG has been a defining factor in my adult life.

Showering exhausts me, so I try to space those out. For example, I do not wash my hair and shave my legs on the same day. I love to cook, but most of the days I grocery shop, I do not cook. It takes a lot of planning and experience to know which activities will cause which symptoms. I kept a diary, followed by a blog, to help me to discover what worked for me and what did not.

What do you wish you knew at diagnosis?

I think it was a wonderful thing that I did not have the internet back then. I got my information from my doctors and from medical books. There is so much misinformation out there. The internet is full of what appears to be knowledge, but it is not always accurate.

I trusted in my excellent doctors, my positive outlook, my family and friends, and I tried to take each day as it came. In 1995, just weeks after my diagnosis, I spoke with the president of a support group who was so negative that I did not feel supported at all… quite the opposite.

Shortly after we were married, I saw a neurologist in Texas who claimed I was faking. I waited until many months later, which severely endangered my life, to seek help again (this time in Seattle, Wash.). I would NEVER do that again. I was forced to see the same doctor when we moved back to Texas many years later (due to insurance).

I did not mention that I had been there before, and through a unique situation, he was unaware that he had “undiagnosed” me. He firmly stated the plan for treatment, which was continuing the IVIg I had been treated with for several years. When he went to put the order in, he asked if he had seen me before because I was in the system. When I explained who I was and what he had said to me, he apologized. I was shocked but felt so exhilarated.

I wish I could go back and tell myself to never doubt who I am, and to seek help from a therapist if I began to doubt my mental health. There is a huge mental health factor for me – stressful situations (which we all face) very clearly cause a flare for me, which only adds to the strain on myself and my family.

Any advice for the newly diagnosed?

• You can still have a wonderful, fulfilling life living with chronic illness
• Do not be afraid to advocate for yourself.
• Seek help if you are overwhelmed, either physically or mentally
• Try not to compare yourself to others living with MG. We have a common bond, but 1 of the reasons MG is so difficult to diagnose is because so many of us are so very different.
• Surround yourself with positivity, but do not be afraid if you get discouraged. Everyone I have ever spoken with who lives with a disease or loves someone who has a chronic illness is likely to feel that way at one point or another. It has helped me to have a network of friends and family who check on me.

What is the most difficult aspect of MG?

Living with MG has been a roller coaster ride. There have been high highs, including a 2-year remission, and low lows with multiple visits to the ICU. For me, the only completely predictable thing about living with this is the unpredictability of it. Our family tries to plan things for the days I think I will be strong, but sometimes I run out of energy by the end of an excursion.

I once had a lovely day of skiing, followed by my husband having to carry me to the car because my legs had turned into those of a rag doll. We try our best to laugh at times like these and focus on the day of fun, rather than how it ended. I do struggle with feelings of guilt when I cannot do all the things everyone needs or wants to do.

How do you cope with your diagnosis?

I work very hard to remain in a calm state – I think of positivity as an energy that flows from inside, but you have to nurture it. I find solace in prayer and meditation, but most of all, I am so lucky to have a wonderful family and a few very special friends who are true comforts to me.

I also very much enjoy giving back to my family, friends, and community. Helping others helps to fuel my energy. I also try to practice self-care by resting when I need to. After 26 years, I still cannot quite get that one right! My husband and kids are now in the habit of reminding me to stop when my symptoms start, rather than pushing through and putting myself in danger.

What accomplishments are you most proud of?

I am most proud of my accomplishments as a wife, mother, friend, teacher, and volunteer. It is my personal mission to share kindness and good thoughts, and to continue to battle on with mental strength regardless of physical ability. I have been able to ski the Alps and swim in the Caribbean, tour Europe and live all over our country. We do our best to enjoy life to the fullest when I am able.

As a military family, we have dealt with many deployments where I have been left as a single parent caring for 2 little ones. All of this is challenging as well as rewarding. I am currently employed as a substitute teacher, which allows me a lot of flexibility in my career. I am also working on several writing projects – there are some exciting prospects on the horizon!

Any tips you would like to share?

Living with myasthenia gravis can be very challenging, and at times I am filled with uncertainty. I have treatment refractory MG – all of the drug regimes we have tried have either had dangerous side effects or have stopped working over time. I am currently on a regime that gives me a few weeks at a time of relief. My family and I try to enjoy those times and buckle down when the symptoms reappear.

I have found solace in writing, coloring, and listening to audiobooks, and I have worked hard to find peace in just sitting and absorbing my environment. When I cannot walk or talk and treatment is weeks away, I plop myself down on a bench in the woods or on one of the seacoast beaches to enjoy watching others run and play.

It is a challenge to stop the feelings of anger, guilt, frustration, and fear of what will come next. Find something that can give you joy even when you feel trapped in your own body. It might not work 100 percent of the time, but it is a huge help during difficult times.