My husband is now fifty three years of age and has Focal Epilepsy. He has been seizure free for the past five years.
I have lived with his active epilepsy for twenty five years of our thirty year marriage. During that time I dealt with the rearing of a family of three children, holding down part time jobs and dealing with his condition. It has affected my life and that of our children on many levels but in particular as follows;
a. Financially
Employers distrust people with epilepsy leading him with no option but to become self employed. This meant that our financial position has been very erratic and at some times perilous.
b. Isolation
Epilepsy is a condition nobody wants to talk or hear about. We hid his condition from family, friends, employers, colleagues, etc. Don’t get me wrong, they all knew he had epilepsy but nobody ever saw him having a seizure. I felt I was totally on my own and still do!
c. Personal Relationship
I feel I have carried this family, shielded my children and my husband. At times he was like another child in the family.
d. Stress
Watching my husband having at least two seizures a month for twenty five years caused enormous stress on me personally. He didn’t drive for eight years so I was driving everyone everywhere including driving him to work. It also affected our social life as we always had to leave parties or gatherings early. Sometimes we could not attend!
Let me add that my husband is the most courageous, honest and upright person I know.
EPILEPSY IS A VERY LONELY PLACE.