KENTVILLE, N.S. — A few years ago, I developed a rare disease called Guillain Barre Syndrome. It could have killed me. Not because Guillain Barre Syndrome can be deadly, but because of stigma. Only one in 100,000 people catch it. This disease makes a person paralyzed and causes your lungs and heart to shut down. It attacks your immune system and then your muscles. Without treatment, you will die from it.
I slowly started to lose the use of my arms and legs. Finally, I fell to the floor and couldn’t get up. I insisted that they call an ambulance. They did. When I got up to the hospital, seeing in the health record that I had been diagnosed with a mental illness, they didn’t even examine me and put me in a bed. The next morning, they sent me home, saying it was caused by my obsessive-compulsive disorder. Later that day, I was brought to the doctor. She told me it was caused by a virus.
The next morning, I fell to the floor again. They called the ambulance again. When I was brought up to emerge, thank goodness my psychiatrist was there. He also knew what was going on. He said to them, “take this man seriously, he seldom has medical problems and very seldom complains about medical problems. Take this man seriously,” he insisted.
I’m so grateful he did.
My psychiatrist’s intervention finally sparked action. They sent a specialist to see me. After she did that she left. She came back a second time with another specialist and he examined me. They both left. She came back a third time and said, “We suspect something. We are going to do a spinal tap.” They did the spinal tap. She came back and told me I had Guillain Barre Syndrome.
After that, within the blink of an eye, I was in ICU. They hooked me up to some machines. The specialist came in and told me about the illness and the treatment for it. She said she had to order the treatment from Halifax. They gave me a blood product by IV for two weeks. When I was out of danger I was put on a regular ward. Then I started receiving physiotherapy. After a few weeks in the hospital, on the day before Christmas, I was discharged. My Dad came down and picked up my wife and I and brought us home for Christmas.
I had to do my own physiotherapy at mom and dad’s. When we got back home from mom and dad’s, I had to continue to do my exercises. I wasn’t able to go to work for eight months. When I did get back, I had to take on smaller orders. I wasn’t able to do a full load.
I have recovered well from this ordeal. The only thing that hasn’t fully recovered are my hands. I still have problems with the fine motor skills in my hands. There are still things I cannot do such as fishing, opening certain things, opening bags and other things.
Because of the stigma related to mental illness, my Guillain Barre symptoms might never have been taken seriously.
I could have died.
Instead, thankfully, this story has a happy ending. I have recovered well; I am still alive. The results could have been a lot different. And they are different for many of us who live with mental illness. There is a lot of stigma out there towards mental illness. Something needs to be done about this situation. We need to speak up and try to stomp it out for good.
Tony Legere is recovering from schizophrenia, obsessive-compulsive disorder, addiction, Guillain Barre Syndrome and alcoholism. He is happily married and lives in Kentville. If you wish to comment on this article, please write a Letter to the Editor or email [email protected].
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