Participants reflected on how their experiences, relationships and diagnoses impacted on identity. Participants often felt different from others around them, reflecting a vicious cycle of both internal beliefs and difficult interpersonal or stigmatising experiences. Participants continued to battle for acceptance and understanding.
Several participants often spoke about themselves using institutional language, which impacted on how they viewed themselves and their difficulties. Vera, despite rejecting the medical narrative of diagnosis, appeared to have unconsciously internalised risk-related, forensic terminology in the way she described herself as having “deteriorated” or “a bad attitude”: “I’m a danger to public and a danger to myself really bad. Self-harmed all me life, ligatured all me life, took overdoses over me life as well” (Vera). This appears to have reinforced her sense of ‘difference’, by separating herself from the ‘public’.
Some participants appeared to be aware of the stigma associated with a ‘PD’ diagnosis, with four participants specifically not naming their ‘PD’ diagnosis during the interview: “I know I’ve got learning disability and the other one, but I’m not happy about it” (Fiona). Similarly for Andrew, experiences of rejection by others when disclosing his diagnosis resulted in him not naming it at times during the interview: “I tell them all me, you know I’ve got ADHD and this diagnosis and everything and they walk away. And call me names and that” (Andrew). Ben wanted “only the people that need to know” to be aware of his diagnosis, whilst Vera explicitly stated she does not tell anyone about her diagnosis due to experiencing stigma from wider family:
EXPERIENCES OF ‘PD’ DIAGNOSIS IN LD
2-16 We kept it to ourselves. I kept it between our family at the time because none of them outside our family would know. And then someone heard it and it’s all over Facebook about me and me mum’s side of the family set rumours about me. “I’m a
psychopath”, “look at her”, “she’s a psycho” and all that. (Vera)
Several participants described how receiving a diagnosis negatively impacted on their identity or confirmed beliefs that there was “something wrong” with them or they were ‘different’ or ‘not normal’. Fiona’s self-esteem was significantly affected after receiving her ‘PD’ and LD diagnoses: “What a dirty cow. What a mong. What a slut. What a cunt. What a bastard. All those” (Fiona). In turn, this appears to have reinforced beliefs about not
deserving relationships or acceptance from others: “I can’t trust her. It’s been since I’ve been told all this, I ended me relationships” (Fiona). Diagnoses have confirmed her ‘difference’ and therefore her worthiness for intimacy with others:
We went out together. We went out for a meal, we went for a drink. We went to Mencap together. And then when I got to know I got that, I thought “no I’m not going out with a sensible lad who can read and write, and someone like me who can’t”. I’m not having it. So I just phoned him up and went “Mike, it’s not you, I’m sorry but I’ve got these things and it’s over with, the relationship”. (Fiona)
For Andrew, receiving a ‘PD’ diagnosis contributed to a negative self-identity and longing to be “normal”: “Like, I don’t know. Like I’m not normal. But every time I tell me mum – ‘I wish I was normal’ – she says ‘you are’” (Andrew). In response to this, Andrew felt new people needed to know his diagnosis, hoping they would accept him and “stick by me”. Due to experiences of abuse over social media and being targeted in the community, Andrew felt special and incredibly close to people who he had maintained relationships with, including his social worker who “throws himself out the way to help me” and a friend who he described as “me brother who’s not me brother”. Andrew had a strong sense of purpose by helping
EXPERIENCES OF ‘PD’ DIAGNOSIS IN LD
2-17 others with needs, which appeared to represent a way of showing and hopefully receiving acceptance:
They tell me what’s wrong with them. Like me mate has got epilepsy. And I say “I’m like you”. I haven’t got epilepsy like, but “I’m like you, I’m not normal so I’ll be there for ya and help you through it”. (Andrew)
Positive relationships with others helped to build a sense of self-acceptance: “No I started looking at it the way me mum is now. Because I am who I am, you know what I mean?” (Andrew).
Both Fiona and Vera rejected their diagnosis due to experiences of people referring to the diagnosis rather than themselves as people. Fiona wished people spoke about her
“problems”, with Vera commenting: “I wish people stop using the personality disorder. Just go ‘how’s your day?’” (Vera). Vera often spoke about viewing herself as ‘normal’, which appeared to reflect day-to-day experiences of stigmatisation:
It’s not a normal person who goes “oh yeah, she’s got personality disorder, he’s got personality disorder, they’ve got personality disorder”. It’s not tattooed on you. You look normal. That’s what I always say. Labels, I wish never ever people used labels on people. (Vera)
Christine felt her diagnosis had impacted on her mental health, as it reinforced her ‘difference’ and restrictions in living a ‘normal life’: “It just drags me down if I think about it” (Christine). Being discharged after 13 years in forensic settings, alongside developing positive current relationships with staff, gave Christine a sense of acceptance from others, helping her integrate into the community:
You see when I go outside, in the community, I think to myself “I’m in the
EXPERIENCES OF ‘PD’ DIAGNOSIS IN LD
2-18 else thinks, I don’t look any different from other people, know what I mean. No one can tell I’ve got anything wrong with me. […] No I just thought it’s my normal life. You know like you’d do at home. So I just lived a normal life. (Christine)
In her current placement, Vera now felt accepted by others: “In here, no-one treats me as different” (Vera). For Amy and Fiona, it was important for staff to emotionally connect to their distress to help them feel accepted and able to build relationships with people: “And when she got to know what happened to me, it was awful for her, yeah awfully upset. I got on brilliant with her, and now she works here, I go out with her, have a laugh with her” (Fiona). Amy felt staff understood her more after receiving “training” regarding her diagnosis and difficulties:
I did the training with them because they needed to know why, what personality disorder emotionally is. They needed to know why I got it. The staff were a bit upset because of what I’ve gone through to get that […] so they were shocked I think. (Amy)