Leading the charge: Myasthenia gravis awareness and advocacy

Written by Shawna Barnes, May 1, 2024

Shawna Barnes at a work conference in July 2023. (Photos courtesy of Shawna Barnes)

I give myasthenia gravis (MG) an A+++.

As in: Acceptance. Awareness. Advocacy.

Not where you thought I was going with that, was it? That’s the point. MG is this fickle dynamic disease that likes to show up when it wants, impede the kind of life you want, but then somehow find ways to make you thankful for the small moments.

My journey didn’t start with me deciding to be a voice for people like me: young to middle-aged women, veterans, parents with chronic illness, disabled business owners. But that’s where I find myself: “leading the charge” to make someone else’s path a bit smoother.

I’ve been living with MG for nearly 12 years. Symptoms that I can now confidently say were from MG started about six months after my medical retirement from the U.S. Army at 27 years old.

I was scared, angry, withdrawn, depressed, forlorn. Pick an adjective that describes the loss of what should have been a 20-year career and instead moving back in with my folks and that was me.

I was keenly aware that something was off in my body. However, many of my seemingly unrelated symptoms were being attributed to physical manifestations of post-traumatic stress disorder.

For a year, I was in and out of doctors’ offices and appointments, with liters of blood being drawn and pills being prescribed. I was in survival mode.

I had been bed bound for an entire month, I was using my wheelchair more than 50% of the time and taking 30 pills a day — not even 30 years old — when I decided I’d had enough. And I got angry.

I was angry because I didn’t feel heard. I didn’t feel as if my concerns surrounding my abnormal medical history were being taken seriously. I was tired of being dismissed.

Angry Shawna became motivated — and loud — Shawna.

Shawna Barnes updates her website while getting her biweekly infusion at her local VA’s outpatient clinic.

Looking for support, discovering MG research

I looked everywhere I could for support. I tried to find people like me who could help me learn how to escalate my care in order to be heard and seen so I could be treated. This is how it started.

I was about three years into my diagnostic journey when anger helped focus my energy into awareness. I found MG support groups on social media and joined dozens of them. I found articles touting current research for treating the symptoms I was experiencing and shared them with my medical team to raise their awareness.

I had to learn to accept that I was not the average patient my providers were used to treating. It meant there was a steep learning curve in knowing not only what to ask for — in terms of testing and referrals for specialists who might be able to help — but also how to ask.

I also had to learn to accept that this was a marathon and the race wasn’t to get first but to simply finish. (For more about my story, check out my column,  “The Whispered Roar,” on Myasthenia Gravis News.)

So how can you get where I am today, hopefully without all the BS? By remembering that MG is an A+++ disease.

Start off by accepting that it is a rare disease — our friends and family aren’t going to know diddly squat about it. You’re probably going to know more than your primary care provider about what is going on with your body. You may even know more than your local neurologist.

Along with that, embrace that honey works better than vinegar. Despite frustrations and anger and the fear of the unknown, open communication that is not emotionally charged will get you further than hobbling in and accusing them of graduating at the bottom of their class.

Also accept that there will be ups and downs, life isn’t fair, and in order to live your best life, you may need to shift your mindset.

Once you have accepted that your whole life has just changed, and that raising awareness of what that means and looks like for you is part of it, it’s time — when you feel ready — to break in those advocacy shoes.

Be the help you wish you had when diagnosed

Advocacy is awareness personified.

You want to try to become the person you wish you knew when you started your MG journey.

I wish I had someone who shared publicly the good and the bad of having MG. The acknowledgement that it was OK to hate the body you’re living in while also being grateful for the opportunity to see the seeds of good in your local community when they step up without being asked.

I wish I had someone to tell me that you can be angry and frustrated and express that to your care team in a way that compels them to want to help you rather than shut you down and hurry you out the door.

I am thankful that I had someone (my mama) who told me I was stronger than I thought and would get through the valleys and enjoy the peaks. It was through the valleys that I learned to speak up about what I needed so I could make it to the other side. I want as good of a quality of life as I can get and to help others find their voice so they too can learn to live their best life despite this disease.

And that includes you. Yes, you. There are ways to be an advocate without going to the extremes that I’ve had to.

• There are community resources for MG. You can search online for “myasthenia gravis support groups near me”  and support groups on various social media platforms. There are an abundance of them. Reddit, Facebook, Mighty Networks, Twitter, and likely other platforms I am unaware of. I know there are other people sharing their stories on platforms like TikTok and Instagram as well.
• Simply sharing your story is another place to start. It helps others to know they are not alone. With a disease as variable as MG, finding another person who gets it can be the lifeline that a person desperately needs.
• Get involved in your local MG support group. The MG Foundation of America has great MG resources for finding local support chapters.
• Ask your provider (specialty or primary) if they know of any seminars that welcome patient stories so you can speak to the people who help decide our quality of life. I went to a conference with anesthesiologists last year and spoke about the challenges I face. Many will read about our disease in a textbook but won’t know a person living with it.
• There are always opportunities for sharing our story in places like this — in a column on a disease specific page, a blog, a vlog, or a podcast. Be open and willing to share and you just may be surprised at not only the impact you have on others but the impact you have on yourself.

So take a deep breath. Wipe the tears. Shift the mindset. And let’s go. We have miles to cover before we sleep.

Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.