People we spoke to had often experienced quite severe mental distress and found that other people didn’t have a lot of knowledge about mental ill health, or the available treatments. ECT in particular was not widely known about and other people were often surprised that ECT was still available as a treatment (see for more ‘First thoughts about ECT and finding out more‘).
A friend of Lorraine and Annie had lost her mum to mental illness and wished shed known about ECT. They felt more people should be told about it.
Tania thought it was a shame that the public had such a negative image of ECT, as it has a high success rate, rapid results and reasonably few side effects.
Talking about mental illness was difficult for most at the best of times. So when they or a loved one first experienced mental health problems, discussing it could be very tough. Many people spoke about the stigma usually attached to mental health issues. Dafydd said a relative of his had had ECT and his father had refused to visit. His family regarded it as something ’embarrassing and shameful’. When Cathy was at college in the early 1980s and started acting ‘strangely’, people didn’t know much about mental health and she was asked to leave. She was later diagnosed with depression and schizophrenia. She felt they ‘didn’t want some mad woman’ at the college. In the present day, some thought mental illness was treated as not like a real illness: Tracy thought you would likely get sympathy for a broken leg but if you took time off work for depression, people would just think ”pull yourself together’. Working in hospitals, Sunil felt there was still stigma and discrimination, even amongst doctors, which he had experienced as a medical professional with a mental illness.
Yvonne says shes had experiences of being treated like a leper by a manager. She thinks there is a fear of mental illness.
Many people held back from discussing their mental illness with friends and family because they had not come to terms with it themselves e.g. they were ashamed, embarrassed or felt a failure. Over time it has become easier for some to talk more openly, but not for everyone. Tristan said although he and his wife decided they wanted to be open about her mental illness, they found it hard to talk about ECT because of the additional stigma surrounding it. Even now he still finds it difficult to talk about.
Although Sunil no longer feels embarrassed and ashamed about his bipolar, he hasn’t told his large extended family much about it. His wife didn’t know about it until they were married.
At first Matt’s wife was embarrassed and wanted him to keep quiet about her illness and ECT, yet since her recovery she has felt more comfortable talking to people about it all.
It has taken a long time for Kathleen to feel comfortable talking about her mental health problems, even to close friends or health professionals. A sense of shame or failure means she won’t talk about some things.
Many of the carers we spoke to, said that they were hugely relieved when they heard that ECT might actually help. However, some people mentioned that their friends and family were frightened when they first heard that someone they cared for might have ECT ‘sort of Frankenstein-type electric shock thing going on’. And once the person had had ECT, the side effects could be upsetting. When Yvonne was brought through the ward after her ECT, she was drooling and one of the boys she had met there, who was a fellow patient, thought she had been harmed and ‘flipped’ (for more see ‘Side effects of having ECT‘).
Jenny’s daughter, who was a medical student, did not want her to have ECT. Jenny didn’t talk about ECT to anyone except her husband.
Sheila’s friends reacted with shock and horror when they heard her husband was going to have ECT. She reassured them it isn’t like in the films.
Once they had seen the effect of ECT, Tania said her family and friends were very supportive of her having it, and even became pro ECT. However, she doesn’t talk about it openly.
While people were careful about where and when they spoke about their mental illness and ECT treatments, some had learnt not to make assumptions about how others would react. Kathleen said although she finds it difficult talking to people about her experiences, including health professionals, in fact people haven’t reacted negatively in the way she expected.
When Enid was self harming in hospital she felt everyone would be looking at her. Later she realised that was their problem, and opening up helped her make new friends with whom she has a lot of fun.
People often learned over time how to better manage the way in which people reacted to mental illness and ECT. Some people said they worked out the people they could trust. People were pleasantly surprised about some people’s positive and supportive reactions to their experiences. Kathleen made a new circle of friends who she could freely talk to about her mental illness (for more see ‘Support networks‘).