What happens when speaking up becomes a survival skill
Advocacy can be uncomfortable, but there's power in telling your story
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I didn’t become an advocate because I wanted to. I became one because the alternative was letting other people decide what happened to my body, my career, and my future. The first time I realized that, I was still in my Army uniform, sick and scared.
When I struggled to access proper care, I did what my folks taught me to do: stand my ground and refuse to be walked over. I learned the regulations and the policies. I became familiar with exactly how far up the ladder I had to go to be heard. And I learned real quick that if you don’t speak up, you don’t get treatment; instead, you get ignored and forgotten.
That was my initiation into advocacy. Not empowerment or inspiration. Survival.
And once I’d had to fight like that, once I’d had to stand my ground against people who outnumbered and underestimated me, I didn’t go back to being quiet. I carried that fire into every appointment, every conversation, every new diagnosis, every moment when my body did something alarming and I needed someone to take it seriously.
That’s why walking into the Veterans Affairs clinic as a female veteran in my late 20s, surrounded by men in their 60s, didn’t intimidate me; rather, it clarified my purpose. I wasn’t just advocating for myself anymore. I was becoming the bridge, the squeaky wheel, the one who speaks up so the people coming behind me don’t have to fight as hard to be seen or heard.
And maybe that’s why, this year, all the A‑words — advocacy, awareness, acceptance — feel like they’re running together, not as separate ideas, but as different angles of the same truth: You can’t advocate without being aware, and you can’t be aware without accepting the parts of your story you once tried to minimize.
Awareness can both expose and free you
That’s been on my mind since May 21, when the National Academies of Science, Engineering, and Medicine held a listening session on toxic exposures. As a veteran, I had the chance to speak about myasthenia gravis (MG), burn pits, and the possibility that the air I breathed during service played a role in triggering the autoimmune response that eventually became MG. It went well, though I wish I’d had more time with the scientists and clinicians on the board. There’s something powerful about being in a room where people want to understand rather than dismiss.
But telling that story out loud required me to revisit chapters I don’t always enjoy rereading: the medical retirement fight and the early symptoms no one could explain; the long stretch of time when I didn’t have a name for what was happening to my body, only the consequences.
Awareness has a way of dragging those memories back into the light. Not as punishment, but as a reminder of how far I’ve come.
And acceptance? That’s the part where I stopped editing my story to make it easier for others to hear. I used to soften the details and downplay the trauma because I felt like my inner circle didn’t really care. I used to make my experiences sound more palatable, more digestible, more “reasonable.”
The truth is rarely polite, yet it’s what moves research, policy, and understanding forward.
That’s what the squeaky wheel does. It keeps the conversation going long after the system hoped it would quiet down.
And yes, there’s a tension in all of this. I still value my privacy. I still want parts of my life to belong only to me. I still feel the emotional hangover after speaking publicly about things I once kept locked away.
But I also know what it feels like to be the young veteran in the waiting room who doesn’t fit the stereotype, the one who gets overlooked because they don’t match what the clinicians expect (or have been taught to expect). And I don’t want the next person to feel that way.
So I speak up — not because I enjoy the spotlight, and certainly not because I’m fearless. But because someone has to be the bridge, and I know I’m strong enough to carry that responsibility without shrinking myself in the process.
Awareness cuts both ways. It exposes you, but it also frees you.
And sometimes, the most powerful thing you can do is tell the whole story, even the parts you once tried to hide.
Note: 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. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
Jonathan Autore
I know where you are coming from ... and the need to ADVOCATE for YOURSELF and OTHERS !!! It took me 8 MONTHS to be DIAGNOSED because doctors and two hospitals and three neurologists at my first of 5 2020 hospitals did not have a clue that MYASTHENIA GRAVIS existed ... or even how to read an AChR set of tests ... that the first hospital ignored ... so the second hospital had to do SIX AChR tests that a visiting BARROWS NEURO INSTITUTE nurse ordered ... I am VERY SERO POSITIVE. I was the lucky one .... my father died of undiagnosed MG and he had all my symptoms ... but they did not know what to do with his swallowing, eating, and legs and fingers, and eating issues ... so they PEGGED HIM ... and sent him home to me. He died 10 days later ... one doctor assumed wrongly that the eating issues were POSSIBLY early PARKINSONs. So, I still need to educate my 8 doctors about MG and always have paper handouts. It's a family gene issue ... as dad's mother and her young sister Marie died of LUPUS, before dad and I died of ACUTE HYPERCAPNIC RESPIRATORY FAILURE. For me I died in the first hospital PACU, of an MRI sedative overdose ... so the nurse say me and did a CODE CALL and I landing in their ICU with a collapsed right lung and three different pneumonia's at once.