Shoshana (54 years old) is married and has two grown children. Her husband was diagnosed with multiple sclerosis (MS) when she was 23 years old. They have remained together through different stages of his illness and care, even though the mental and social impacts of the disease have been particularly strong, with several negative consequences for Shoshana and her family.
Shoshana was in her third year of marriage when her husband developed blurred vision and numbness in one of his legs. The period prior to diagnosis was challenging for them, as the medical assessment could only be made through a process of elimination. A few years later, Shoshana’s husband had to give up his occupation as carpenter. He then became a volunteer in a school for mentally challenged children and was later hired as a teacher assistant in that same school. In the meantime, Shoshana has always worked as a clerk in a non-profit office. The period after Shoshana’s husband lost his well-paid job was financially very difficult for their family.
Shoshana describes the problems associated with this disease as “hidden symptoms” because they are hardly visible to other people. Such symptoms include chronic fatigue, bladder control issues and cognitive problems. Shoshana’s husband changed from being a patient and kind person before the illness into being someone with a short temper and a persistent anger directed towards his own wife. He also became easily engaged in socially unacceptable behaviour, which has had a very negative impact on Shoshana’s life. It is extremely difficult for Shoshana to deal with her husband’s criticism or unfriendly remarks, particularly when there are other people around. Shoshana, who enjoys socializing by nature, has now become hesitant to make new friends because she is worried about embarrassing situations involving her husband’s aggressive or unacceptable behaviour. She sometimes copes by leaving their home in the daytime for short periods, letting things blow over, and, with time, she has learned to choose her battles with him.
Although her situation is not easy at the moment, Shoshana explains that she has lived through other challenging periods when, as a result of illness, her husband was even more verbally abusive towards her. During those periods Shoshana felt like she was drowning and unable to come up for air. She had suicidal thoughts and considered divorce. Fortunately, Shoshana and her husband sought psychiatric help, which was covered by their insurance, and this intervention partially relieved the problem.
Shoshana advises caregivers and chronically ill people to look into practical arrangements for things such as power of attorney, advance directives for their family members’ care plans, life insurance and disability insurance. She and her husband have, for example, arranged for all medical decisions to made jointly between father and daughter in the event that anything should happen to Shoshana.
She also urges anybody with similar experiences (suicidal thoughts or psychological abuse) to find assistance as soon as possible by going to a doctor, a friend, or any others willing and qualified to help.