Jan Auger
How This All Started: My GBS Story
When one explanation took overโand speaking up changed everything.
I didnโt know what Guillain-Barrรฉ Syndrome was when this started. I just knew something wasnโt right.
I was diagnosed in August 2022โbut it didnโt start there.
At first, the doctors told me my symptoms were from alcohol and sent me home.
I went back again. Same answer. But I was getting worse.
I fell and could barely get up. Thatโs when I went to the ER.
I stayed in the hospital for two nights, and again they told me my liver numbers were high from alcohol. In my case, they were related to what was actually going on with GBS.
But once alcohol became the explanation, it was the only one anyone seemed to hear.
What I was feeling didnโt match that.
On Sunday, they were ready to discharge me. I remember telling the doctor:
โThis isnโt alcohol related. Whatever this is started in my feet and is now at my waistโIโm afraid of what happens if it reaches my heart.โ
Up until that point, they were making assumptions. If you donโt clearly advocate for yourselfโespecially when things are confusing and scaryโpeople will fill in the gaps with their own explanations.
She paused. She went and did some research and came back and said it was possible I had Guillain-Barrรฉ Syndrome. She asked me to stay another night to see a neurologist the next morning.
He knew right away. They started treatment that dayโbefore the lumbar puncture even confirmed it.
Meanwhile, I was having severe pain every nightโintense, unexplainable, and predictable. From what Iโve learned since, GBS can cause nerve pain that shows up at night. Not for everyoneโbut it did for me. At the time, no one could explain it. As my liver numbers kept rising, that assumption only got stronger.
One night, during that pain, a nurse said: โI bet youโll think twice before having another drink.โ That stayed with me.
The next day, the diagnosis was confirmed. Not long after, that same doctor came into my room and thanked me for advocating for myself.
I thanked her for believing in me. Looking back, advocating for myself changed the course of what happened next.
The hardest part wasnโt the diagnosis. It was knowing something was wrongโand not being believed.