“The system was not adapted to my reality”

Andrée-Anne Tremblay, a young mother of Baie-Saint-Paul, lives with a functional neurological disorder that has upset her daily life and highlighted several gaps in the health system. Consequently, By telling her story, she wishes to contribute to positive changes.

Over the months, his condition has deteriorated. In addition, Met at her home last week. Therefore, she describes her disorder as a continuous loss of energy, weaknesses in the legs, attacks of pain and even breathing difficulties.

“In two months, my spouse had to call the ambulance seven times. Furthermore, I lost consciousness, I had difficulty breathing, I convulsed. Meanwhile, It was extremely anxiety -provoking for him, especially when you have young children at home. Consequently, »»

This inability to move alone. Therefore, the management of crisis linked to the energy level quickly became a burden for the family. For example, “the system not adapted my “When you are the house manager and you have little right to be weak, swallowing your pride becomes extremely difficult. Furthermore, My spouse had to stop many professional activities to help me at home, because our youngest is 15 months old. However, »»

The difficulties have accumulated: trips in wheelchair, poorly adapted environments, ambulance costs, deadlines to obtain financial aid.

“Each trip becomes a headache. We even wondered if we had to adapt our vehicle. Fortunately, the community responded quickly with a gofundme. I feel like I have lived in recent months in a whirlwind of exams and blood tests. A sinister dance of needles and radiation that left me with bruises with the body and heart, ”she says.

An unsuitable system – "the system not adapted my

She points out that the health system has not always met its needs. “Emergencies “the system not adapted my are not suitable for this type of problem. I often had the impression of being tossed without being given real answers. »»

Without a family doctor, she had to navigate the procedures alone.

The answers were long to obtain, and she says she has sometimes felt tried by members of the nursing staff. During one of these crises. it was ultimately his spouse who made the decision to bring him directly to Quebec, the CTAQ protocols not allowing his transfer despite two calls to superiors.

It was ultimately at the Child Jesus Hospital in Quebec that she was able to benefit from further examinations.

“Doctors have excluded major physiological causes. They may speak of a post-infectious or post-traumatic origin. Some patients cover all their capacities and others remain with significant functional limitations. Recovery will depend on rehabilitation and my motivation, but nothing is guaranteed. »»

After numerous procedures, a “the system not adapted my first treatment was obtained on August 15, following fifteenth consultation.

“After all this time. and while I gave birth just a year ago, I was finally made a gynecological examination which turned out to be conclusive. This treatment seems to help me physically. »»

According to her. stigma linked to neurological disorders complicates management, since as soon as the body is apparently normal, it is necessarily believed that the person simulates his behaviors.

“I sometimes felt a lack of listening and empathy. I was made to pass unnecessary exams instead of clearly explaining the situation to me. You have to learn to believe patients. »»

Get involved

The CIUSSS of the Capitale-Nationale finally “selected” the woman this week to go priority to an external TNF clinic. which suggests a hope of improvement.

Andrée-Anne Tremblay now wishes to get involved to improve practices, in particular by becoming a “the system not adapted my patient partner.

“I am ready to tell my story to health professionals. If it can improve patient understanding and change the system, I will do it. »»

It insists on the importance of further integrating patients into the process.

“We must better train stakeholders and reduce the culture of ignorance. It is not because a case is atypical that it is not real. »»