EXPERIENCES OF ‘PD’ DIAGNOSIS IN LD
2-11 This super-ordinate theme relates to participants’ experiences of having limited knowledge and understanding of the diagnosis of ‘PD’. It encompasses the way information about diagnosis is received by people, and how information is given by professionals,
reflecting an inherent power imbalance.
When asked about their ‘PD’ diagnosis, only two participants were able to talk in detail. The majority had little to no understanding of the diagnosis and did not feel it helped them make sense of their difficulties. Five participants commented on cognitive difficulties affecting their understanding and a need to increase accessibility of information: “Like break it down a bit. Like long words I don’t know, how to pronounce them or understand […] and the meaning behind it as well” (Andrew). Ben felt services had not provided the information or support needed to understand his difficulties:
I need to understand it a bit better. So say, how can I just switch like that, one minute I could be happy and then I could be doing something. But I don’t know what tips or switches it. The light bulb moment. I don’t know what turns the light bulb on. And what turns it off. I just need some information about it. (Ben)
Similarly, Amy gave up trying to understand her diagnosis due to difficulties related to her LD: “They did give me paperwork, like what the hell is it, but because I’ve got learning disabilities, I can’t read it so I just left it and went “oh, I’ve got a personality disorder leaflet”, just left it” (Amy). Most participants were unsure why they were given a diagnosis and what it meant for them regarding services and support moving forward.
For others, their lack of understanding demonstrated an implicit reliance on professionals to make decisions for them, reflecting a lack of power they hold within
services: “Yeah someone must have said something, there was a letter or something, I’m not sureI’ve had, my doctor wrote a letter about something” (Kylie). Inability to retain
EXPERIENCES OF ‘PD’ DIAGNOSIS IN LD
2-12 alright really, I don’t mind really […] I’ve been diagnosed with it for a while now” (Kylie). For others, a process of getting “used to it” revealed an adverse impact of being given the diagnosis originally: “Doesn’t bother me. It’s not a word for me anymore. I’m not happy with it but it don’t bother me” (Vera). Again, Amy highlights the impact of professionals
withholding knowledge about diagnosis:
I just wish when they gave me the illness and told me what it is, they would have told me why I got it in the first place, because they never, they just said “you’ve got a personality disorder”. So for a couple of years, I didn’t know why they diagnosed me with that because they never give me why I’ve got it […] no one told me the reason. (Amy)
This example illustrates Amy’s trust in services to meet her everyday needs. The use of the word ‘they’ represented all professionals as an amorphous, powerful ‘other’, highlighting the power difference between participants and professionals in diagnostic processes.
Receiving their diagnosis was not viewed positively by most participants, reflecting frustration at being unaware or uninvolved in the process. Andrew described shock at finding out his ‘EUPD’ diagnosis within a busy meeting: “It was in a meeting believe it or not. And me mum and dad were there. They didn’t even know I had this until then” (Andrew). For Beth, her mother rather than her team informed her of the diagnosis, invoking confusion and uncertainty: “I just said “what does it mean?” […] I just wanted to know about it” (Beth). Beth spoke of others infantilising her, which was reinforced by others holding back
knowledge about diagnosis: “Like and I think she’s probably waiting for me to get older to know about it […] I don’t know when she’s going to read it to me” (Beth). This placed Beth in a continued position of dependence on others.
For Fiona and Vera, receiving the diagnosis resulted in outright rejection of the label. Fiona felt “angry” and “ashamed” receiving her diagnosis from social services and not her
EXPERIENCES OF ‘PD’ DIAGNOSIS IN LD
2-13 care team: “Because no-one else had mentioned it to me. Everyone else knew about it, except me. And me social worker told me. And he said the people in [previous team] should have told me” (Fiona). Again, this highlights the power that comes with ‘hidden’ knowledge and also possible worries professionals may have in disclosing diagnoses, with potentially adverse consequences:
I burst out crying, and I said “no, I haven’t got it”. And the social worker said “Fiona you have”. […] I turned round said “fuck off now, and get out that door now”. “I haven’t got it so there!” And he said “Fiona love, you have got it” and we were arguing and fighting. In the end I got told that I did have it. (Fiona)