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H. Y. Leung - Interview 29

Age at interview: 60
Age at diagnosis: 40
Brief Outline: HY Leung, 60, was admitted to a London psychiatric hospital. She says her doctors don't understand what she's going through. She feels God accepts and understands her, which supports her to face the challenges of her illnesses and to carry on her life.
Background: Housewife, divorced with 1 adult child. Ethnic background/nationality: Chinese (born in China).

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H. Y. Leung helped to write her story. English translation available below.

H. Y. Leung was unwell when she was 40 and also suffers from 'out of control' and disabling headaches. Since then H. Y. Leung feels like things and her actions are out of her control and has felt helpless. She later was admitted to a psychiatric hospital.

When she was hospitalised, she felt happy because she thought she'd get the treatment she needed, but she didn't realise she was on a mental health ward. She could not understand how she could have ended up on a mental health ward in hospital. While she was in hospital she was forced to take medication without really understanding what it was. After being discharged, she went back to Hong Kong to receive treatment. She says that although the medication helped with her recovery, it did not help her relationship with her husband, who couldn't understand her illness.

In the treatment process, H. Y. Leung feels that doctors in England don't really understand what she's going through, and the main reason is the poor quality of interpretation. The interpreters did not help her understand the treatment, and could not support the doctor to understand her, which led to problems with her treatment. She hopes doctors can make more of an effort to understand patients and their history, and says the quality of interpreters should be improved.

H. Y. Leung thinks she has experienced discrimination in the process of receiving treatment in the hospital and seeing her GPs in the UK. She believes it is both because of her mental health problems and because she does not understand English. In the process of seeing doctors, she felt she did not receive proper treatment according to her urgent needs most of the time.

As a result of her mental health problems, H. Y. Leung was unable to do regular things like shopping, housework, reading, writing or travelling like normal people; and finds it frustrating because she could not fulfil her desire to do these things. It would be useful if she could get practical support, for example, with her shopping, seeing the GP, and translating letters from the government. She gets on with her life by going to shopping, visiting friends and doing housework to manage her headache and illness. H. Y. Leung has also joined an organisation for people of Chinese origin and participates in meetings and other activities, and she says this has helped her to rediscover her strengths and capacities.

H. Y. Leung finds her religion very helpful and supportive. She says that people do not understand her but God understands and accepts her. In her everyday life, she manages by seeking guidance from God. She hopes to receive help from doctors so her head and brain can function normally as before.

H. Y. Leung believes that a lot of service users they have their strength, but they are not given opportunity and environment for them to manifest and hopes that sharing her experience will help others. She hopes the government can promote mental health issues to correct people's misconceptions, so that people from different walks of life can have a proper understanding of mental illnesses. She believes this would support the treatment process in a practical way.

 

She says try to be positive and look to the future; get help from organisations offering support...

She says try to be positive and look to the future; get help from organisations offering support...

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To other service users, I hope they can look forward in life. Looking at problems and life in a positive attitude, and be able to draw strength from the stories of people who may have had similar experiences, but yet, have still recovered.  I hope they are able to join more community activities, e.g. organizations offering support with mental health, and then you could broaden your horizons and not confine yourself. I hear that many people enjoyed the cruise organized by the [organisation offering support with mental health], or outings like going to parks. They really enjoyed it and I think that's really important.

 

She would like health professionals to understand people with mental health problems better and...

She would like health professionals to understand people with mental health problems better and...

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If I ask you to say something to mental health service providers, what you would like to say to them?
 
I would like to tell all the psychologists, psychiatrists, or doctors, to really try and understand their patients fully and in greater depth. Please do not just do what you are told. If, every time you ask the same questions, how much can you understand about the patient? I hope that they could not just look at the present situation, but also take into account of their history. But do you know about my history? Am I one of those people who only sits around at home but doesn't want to work? I think they are a bit biased and do not get the full picture. For other professionals, I hope they could work responsibly and be compassionate and welcoming. Maybe you would think as we are talking about professionals and being welcoming is not relevant to their profession. But I tell you it does. Around 10 years ago, there was a time when I didn't want to eat anything, and I was very depressed, but I needed to eat something. I was walking down the street and went into a grocery, I met a Caucasian shopkeeper, he smiled warmly at me and asked me sincerely what I would like to have, in that moment I knew what I wanted to eat because of that gesture, my head felt clearer, and I knew what food to make when I got home. My personal experience has taught me that such a small gesture can actually makes a big difference and can give you happiness and feel make you feel welcome. I realize that is what's lacking in a lot of doctors or health professionals. That's how I feel.

 

She felt her GP didn't try to understand what was wrong with her, whereas another doctor gave her...

She felt her GP didn't try to understand what was wrong with her, whereas another doctor gave her...

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Since I brought pills from HK in 1988, I, I would still go to the hospital for regular check-ups. But again they would only ask me whether I took the medication, what time I get up, what are my daily activities, do I feel suicidal. Asking all these questions was not what I felt I needed. What I needed was to solve my marital problems; I need to know why my mind is not functioning properly. I need to solve these problems. But seems I didn't get any answers from them and was I left very disappointed. By end of '94, no matter how often I take the medicine I didn't seem to get any better. My mind might have one feeling at the park and another feeling at home and another on the street. I couldn't work out which of these was my mind's true feeling. So I thought it best to go home and sleep. Because of this, my husband accused me of being lazy and not wanting to work. All this added to my stress. After a while, I quit taking the pills and didn't see the doctor anymore. I found out later I had anemia, so I went to see the GP again, I was told a normal level should be 13 but I only reached 6. There was a volunteer who went with me, I think he was a psychology student. He translated to the doctor that my mental and physical health was not very good and I looked very pale. The doctor said I was alright and that it was nothing. Then I felt that the doctor completely failed to make an effort in understanding my situation and making a proper diagnosis. This added to my reluctance to see the GP further. Finally by 1994, I gradually took less and less medication and finally didn't take any medication in the end. I went to Healthy Living Centre and said I would like to change to a Chinese doctor and luckily they managed to find one for me. For the first few times that I saw the new doctor while not taking medication, I began to feel better, but after a few more appointments, my problems resurfaced.
 
After I left hospital, I would still have regular appointments to the outpatient's service at a psychiatric hospital all the way up until 1998. Out of all the doctors I'd met up to that point, I felt there was one doctor who really helped me. He wouldn't just ask standard questions regarding my medication and such, but really tried to get a deeper understanding of me. He asked me to partake in activities at my local community centers but I told him I couldn't because of mind's problems- the doctor seemed very understanding of this. I mentioned to him about my son's study, as he may have been affected by my marital problem. The doctor helped to write a letter to my son's school, so the school could have a better understanding of his situation and could assist him. Whether or not the school managed to help my son is another matter, but at least the doctor had done his part. I also told him about my marital problems; I wasn't happy, I couldn't apply for benefits as I was still living with my husband and my mental illness had always been a strain between us. Because of my issues, he very willingly helped me send letters to benefits and family counselling services. The letters were helpful, as those services later contacted me along with the help of a Chinese association. Even though I didn't get anything out of it as they didn't contact me further, at least the doctor did his job responsibly and didn't just repeatedly ask “Did you take your medication?” He tried to understand and help in other areas affecting my life. In all my years of seeing different doctors, that was the only doctor that did so. All the other doctors just asked me the same questions about my medication, diet, sleeping patterns, and daily activities. There was a very big difference.

 

She feels she has lost control of her life since she became unwell. (Audio in Cantonese, text in...

She feels she has lost control of her life since she became unwell. (Audio in Cantonese, text in...

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Before I was ill, I could do a lot of things for myself. Everything was normal. I could take care of myself; I could manage my life well and very smoothly. But since I became ill, things started to go wrong. My illness means that my mind does not function properly; as if my mind is not entirely under my control and that I have to do what my mind feels like doing. People who haven't experiences this would obviously find very difficult to understand. Whatever tasks you want to perform is always under your control, right? But what I am doing is not entirely under my control.

 

The language barrier meant she and the doctors did not understand each other and she was forced...

The language barrier meant she and the doctors did not understand each other and she was forced...

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I think because of the language barrier, communication was nearly impossible. My experience of Chinese medicine/treatment, doctors would examine carefully through sight, odour, question and autopsy. But during my treatment here, the doctors just tell me to do counting exercises, which at the time my mind could not mentally manage. The doctors then prescribed medication for me straight after. I wondered how the doctors could prescribe drugs at such an early stage. Shouldn't you ask me about my history and situation, before giving medication?  I constantly worried about my medication; what type of drugs are these? Why won't the doctors tell me? Because I don't understand English and because the doctor told me that I have to take medication, adding with the strange environment, I felt a bit worried and scared. I did not want to take the medication. I tried my best to communicate that I would like to have interpretation. They didn't understand very well, but brought along a nurse who knew a bit Chinese. She asked me to open my mouth and swallow the medication. I felt like I was forced to do something I didn't want to. She then asked me to open my mouth to check whether I swallowed the pill or not. I did not approve of this method, but there was nothing I could do, so I had no choice but I take the pills. I later realized thought that it could have been a tranquilizer or sleeping pills that I had been given, although I didn't sleep at all that night.

 

She describes shaking uncontrollably. Text only

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She describes shaking uncontrollably. Text only

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My problems started in the year 1997. Around this time was when my mind started to have problems. When I was washing my face, I felt like there some energy running up from my body to my head. Not thinking anything of it, I went to bed after. In the middle of my sleep, I started to laugh uncontrollably then my hands started to shake involuntarily. Naturally, I felt scared because of this. I tried to sit up and get a drink of water, but the shaking continued. That's how it all started. I then went to see emergency services at the hospital. Soon after I arrived I felt fine, but then later after I left my problems persisted again. At times I would not be able to walk at a faster pace, or I could not do things for myself properly. I went to see a few doctors but the situation is all the same. That's how it all started.

 

She describes how her brother looked after her when she was unwell and asks other families to...

She describes how her brother looked after her when she was unwell and asks other families to...

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Here, I would like to say something for the service users' family and friends. I have a wish. I have been ill for a very long time and the support I received were from my family in Hong Kong. My brother and sister in law supported me psychologically and materially, and for that I am very thankful. They did not treat me like a person with a mental illness. They willfully brought me to surgical clinics and welcomed me stay with them. When I felt particularly sensitive to sound and had to switch the TV off, my family did not mind and would ask their children to turn off the TV and cooperate. My brother would shop and cook for me after he finished work when I couldn't do so. I wish that the service user's family would support them morally and give them encouragement. As you do not suffer from a mental illness, it is very difficult to empathize, but you must realize, they do not want to be the way they are. As a family, your support and encouragement can embolden them, make them feel less alone, and perhaps help them recover.

 

She felt worried and sad when she couldn't communicate with the doctor in hospital. (Audio in...

She felt worried and sad when she couldn't communicate with the doctor in hospital. (Audio in...

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Distressing things happened around me; people stripping naked and wandering off, people crying, I saw many of these incidents, but could do nothing about it. One morning after taking the medication the night before, I experienced a very unsettling and frightening sensation I had never come across before. It was, as though my head were not physically present. Then I felt many images swirl and flash across my mind, I saw images of my brother, some of my family and of people I'd never met. I was scared as I didn't understand why I would experience this. I stayed in the hospital for 6 months. I found that sometimes I could walk properly but sometimes I couldn't. I have to hold on the trails and take one step at a time to get around. Because of the language barrier and without interpretation, doctors didn't understand what was happening to me and probably thought that this was just bizarre behaviour of a mental patient. Even now, there are times when a part of my head feels strained and constricted forcing me to close my eyes for comfort. I was once forced to go to the hospital canteen for breakfast even when I was very tired and while my head was again in a constricted state, I felt very helpless and frustrated. I asked the steward why I must go as I wasn't hungry anyway. The nurses just said I must go, so I had to close my eyes and walk while supporting myself against the walls. This was the only way I could move around while my head was in feeling this way. All during breakfast, I still had my eyes closed as my migraine persisted. Then I started crying. I cried because I could not understand how I had come to this state, why I had these migraines and why I had to queue up for breakfast when I wasn't even hungry. I was never like this before! Other patients and staff saw me crying and they tried to offer words of comfort, but of course, they did not know the real reason why I was so heartbroken.

 

She did not realise at first that she was on a mental health ward. (Audio in Cantonese, text in...

She did not realise at first that she was on a mental health ward. (Audio in Cantonese, text in...

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After I was hospitalized, and even when I arrived at the hospital, I didn't know what ward I was in. I was actually happy about it because I thought I was finally getting the help I needed from the doctors in a hospital environment. But in reality, it wasn't what I had imagined. Even though it was a long time ago, I remember many things vividly. I remembered when I got to the hospital, I saw how good the environment is, compared to the state of the hospitals from my homeland of China. When I saw the environment and with all the good equipment, I felt that I could get the treatment I needed. I thought the doctors would know how to help me. That was why I was happy. The nurses saw me smiling and they were surprised and wondered why I am smiling. After a few days, I felt that the patients in the ward are behaving strangely, e.g. some strip down and wander around, or some will repeatedly rummage through their own bags in the middle of the night, saying that they were about to be discharged the next day, when actually they were not. This was all very bizarre and made me think why I would end up in such ward for treatment, for an illness that I know nothing of. After one or two weeks, I realized that I was placed in a mental illness ward. Then I understood why nurses were surprised when they saw me smiling, they must have thought this was an abnormality of a mentally ill patient, when actually, I smiled because I felt that I would finally receive proper treatment.

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