Rochelle migrated to Canada from the Caribbean. During the process of adjusting to life in Canada, settling into a new job and making friends, she was hit by a curveball; she started having seizures. At the time she had no idea what these episodes were and like a lost soul she struggled to understand what was happening to her.
After seeing a doctor and numerous tests, she was diagnosed with epilepsy. What does this mean? How will this affect my life? With more questions than answers, Rochelle’s journey began. This was a very challenging journey worsened by the fact that many in her cultural community held on to strange myths and misconceptions about epilepsy.
Work colleagues kept away from her and whispered about her ‘strange’ actions during complex partial seizures. She started to believe what some were saying about her; that she was ‘weird’ and ‘not normal’.
Rochelle had what she recalls was a very embarrassing seizure while attending a relative’s wedding. This proved to be a significant turning point in her life as a member of Epilepsy Toronto was also at this wedding and told her about the agency. She was encouraged to attend one of our support group meetings.
As she sat in that first meeting and looked around the room, she saw what looked like ‘regular’ people. As she listened to the group members share, she heard what sounded like ‘her story’. Like a lightning bolt, she was hit by the realization that she was not alone and that she was not ‘weird’; rather, she had a neurological condition that affected 1% of the population. Rochelle has not missed a meeting since that day and looks forward to attending the monthly meetings where she feels comfortable talking about her challenges and concerns.
Support Groups are at the core of Epilepsy Toronto’s services. Rochelle’s story is not unique. Support groups provide opportunities for clients to connect with others who are also dealing with the impact of epilepsy. They are a forum for sharing information, coping strategies and resources; an environment to talk freely without feeling judged.
Our members have told us that they have formed lifelong friendships and have become more comfortable talking about their epilepsy since joining a support group. As one client shared, “I feel that I now have a support system outside my family that knows what I am going through. I no longer feel alone.”