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Joanna

Age at interview: 46
Brief Outline: Joanna’s older daughter started self-harming when she was seventeen. She has been diagnosed with ME, bipolar disorder and borderline personality disorder. Joanna describes some positive outcomes, both on her relationship with her daughter and in her professional life.
Background: Joanna, aged 46, is divorced with two daughters aged 19 and 22. She works full time as manager of an advice service. Ethnic background: White European.

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Joanna’s elder daughter was diagnosed with ME when she was twelve. She became depressed and was seen by the Child and Adolescent Mental Health Service (CAMHS) but did not relate well to her counsellor there. She started cutting herself when she was about seventeen after she was discharged from the CAMHS and a relationship broke down. On two occasions her wounds were so bad that Joanna had to take her to A and E, where she was seen by a duty psychiatrist. Eventually she was given a diagnosis of bipolar disorder and borderline personality disorder. She went to university but had a breakdown in her first year and came home. Joanna has submitted a complaint to the NHS because it took several months for her daughter to be seen by a local psychiatrist and there was no continuity of care. Joanna also wrote to her MP, who contacted the head of the local NHS trust. Her daughter is about to return to university where Joanna hopes she will benefit from dialectical behaviour therapy.

Joanna was very worried when her daughter told her that she was self-harming. She thought she was a failure for not protecting her daughter from mental damage and felt guilt and blame that she had somehow been responsible. She went to see a counsellor through her work, who explained that people often use self-harm as a release and advised her to help her daughter by telling her about safe ways to cut herself. Joanna’s daughter told her that she harmed herself because she was so sad that she wanted to kill herself, and she wanted to do something to take her mind off killing herself. 

When her daughter was first referred to the Adult Mental Health services Joanna was offered contact with a service for parents and carers. She decided not to take up this offer but to cope by herself, because she is a practical person and doesn’t like ‘airy-fairy talk’. She says contact with the professionals treating her daughter was difficult because of confidentiality issues, though she understands the need for this. When Joanna wrote to them on her daughter’s behalf she would include a note signed by her daughter, giving permission for her mother to talk to the clinician, but sometimes there were bureaucratic barriers to communication. Joanna is extremely critical of NHS waiting times and access to services, and of letters written in jargon. At one stage her daughter was assessed five times by different health professionals before being offered suitable treatment.

Joanna says it was difficult balancing the needs of both her daughters. Her younger daughter is very protective of her sister, but also jealous of the attention she receives. She started burning herself with hair straighteners but did not tell her mother until much later because she didn’t want to add to her problems. She organised her own counsellor when she was seventeen and no longer harms herself. 

Joanna had to take time off work to look after her daughter, but she works for a non-profit organisation and her managers understood her situation. She is a single parent and says that the whole experience has brought her closer to her daughter. There were also positive effects on her professional life, as in her work with young people who self-harm she is able to be non-judgemental and not scared. She did a MIND training course which was helpful. She can talk a bit about her circumstances to work colleagues, but doesn’t want to scare them with sensitive issues. Her mother knows about Joanna’s problems but Joanna says this isn’t helpful as she has to defend herself and her daughters. Joanna finds support through her counsellor, who she says is excellent, and through various internet sites, including MIND and Time to Change. She also finds prayer helpful in calming her, as she believes there is a plan and greater power that will see her through. She would like information that she could digest and understand for herself, and practical support, for example someone to sit with her daughter at night.

Joanna is still worried that her daughter might kill herself. She is exhausted by having to constantly prop up her daughter and admits that sometimes she is relieved when her daughter is away and there is peace at home.

To clinicians she says “Include us, even though our children might be adults. Listen to us because we are there twenty four hours and okay, we might be over-protective, nuisance parents but we do carry pearls of wisdom that you can find. Just because we are not doctors.. we should not be dismissed because a lot of us are highly educated, observant people.” Joanna advises other parents to give unconditional love and not to accept long waiting times for referral. “Make a fuss. Seek help from various sources until you find what’s suitable for you. Don’t be pushed into groups… that you wouldn’t click with. It will be okay, you can carry on.”
 

People in Joanna's family did not talk about mental illness.

People in Joanna's family did not talk about mental illness.

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And has anyone else had any serious mental health problems?

I don’t know because my ex-husband’s mum died before I met him and I was given a polished version of her death but the family gossip says otherwise, that was a suicide and she suffered from depression for a while. So I cannot confirm.

But a possibility, yes…?

There is a possibility.

Yes.

Yes.

Plus I come from family, where those things were completely, didn’t exist. You did not talk about it.  Very kind of different mind set. You just get on with it.

Yes. Yes.

So when I suffered from post-natal depression, in this country and my family was in another country, I didn’t have much help because I couldn’t speak to my mum about it.
 

Joanna felt a failure when her daughter self-harmed and worried that she had been a bad mother.

Joanna felt a failure when her daughter self-harmed and worried that she had been a bad mother.

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So if we can go to what it’s been like for you. I mean when you first found out about it. How did you feel then?

Failure. Absolutely failure. Haven’t protected my daughter from some kind of mental damage that she has to escape to these kind of actions. From the very beginning, when I was pregnant with her, what did I do wrong? Did I eat the wrong things? Did I get too stressed? When I was young, did I feed her properly? Did I interact with her? When she was older, did I praise her enough? Did I give her positive encouragement and good stuff? Did I criticise her too much? Did I hit her too much? All the times, since she was conceived, I was looking for a moment where I could have caused it and I I am still firmly convinced that if I did something else, that would not have happened and that’s my feeling and I see the counsellor at work, when I need to, and he’s excellent and he’s great. He helped a lot but I still have this I have nurtured and moulded this person, so if she behaves in that way, that must have been something that I did or did not do. And this is extremely difficult and I know that she’s an adult now and she takes responsibility for her choices and I can be only supporting her but that was very, very difficult, the blame.

The guilt.
 

Although Joanna did show her disappointment, she didn’t shout or criticise her daughter.

Although Joanna did show her disappointment, she didn’t shout or criticise her daughter.

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When I first found out about my daughter’s self-harming, I was very, very worried. I thought that it was behaviour similar to drug taking on a scale of wrongness. And I didn’t shout at her, criticise her but I tried to cajole her not to do it and try to stop her and try, and show her how disappointed I am, when you know, she showed me the injuries. And then, because I couldn’t cope with worries about it, I went to see a counsellor through my work, who, it was a very enlightened moment. He explained to me that this is a release. That it’s better that than some really very harming behaviour like suicide attempts or some other behaviour that creates that release that I could help her in other ways, provide safe ways of doing it. So I then became so proud of myself because I was being modern and helpful [laughs].
 

Joanna was very worried about her daughter’s future.

Joanna was very worried about her daughter’s future.

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So what are your thoughts about the future now?

Very worried. Very worried. Partner, her partner would have to be a very, very strong resilient person. One day, she’s going to go too far. She’s going to get, she’s going to cut too far or she’s going to take too many pills to help her sleep. I am very worried. I am also very tired.

It’s a terrible thing to enjoy when she’s away. I think it’s the ugly, the ugly side of my emotions that she goes away and there’s peace at home.

It’s a relief, yes.

It is a relief and because she involve, she involves all of my energy. I need to prop her up. I need to be very careful. If I have to criticise her, I need to put it in a positive way, “Why don’t you next time.” Instead of behaving like a normal sometimes fed-up human being and saying, “Would you bloody blah blah blah?” And it’s very draining. So I want to be left alone but I would be worried if I were to be left alone.
 

Parents should be included, not dismissed, says Joanna.

Parents should be included, not dismissed, says Joanna.

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And what, have you messages to the clinicians and healthcare professionals?

Right. 

That would be from a parent, from a carer point of view, include us, even though our children might be adults. Listen to us because we are there twenty four hours and okay, we might be over protective, nuisance parents but we do carry pearls of wisdom that you can find. And just because we are not doctors and we don’t have medical degrees, we should be dismissed because a lot of us are highly educated, observant people.

So yes, include us.
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