Table 4.

Major and subthemes arising as consequences for the individual.

Theme, subtheme, description	Exemplary comment
Psychosocial impact
Negative psychological impact    Negative psychological impact of labelling	For some, being seen through the lens of their diagnosis meant being deflated, “robbed of flesh,” crudely translated into an incomplete symbolic language that “doesn't capture my reality, doesn't see me in my full human complexity, doesn't tell anything substantive about what it's like to actually be me.” As one person said, “the diagnosis is like looking at a map of the city but it isn't the city itself” (139) That number doesn't sum me up, it doesn't tell the whole storey. I felt offended when I saw it. I didn't feel understood–I felt reduced, diminished. There's nothing in the diagnosis that was really at the heart with what I felt I was afflicted with (139)
Positive psychological impact     Positive psychological impact of labelling	Patients of [Black and Minority Ethnicity] origin described the importance of being believed and taken seriously by their healthcare professionals, and they described how difficult it had been to convince the GPs of their symptoms: “That is the hardest thing, that is what I find the hardest, even if they didn't find they can cure me, but, just to believe me and have understanding of me, that's all I want” (92) The diagnosis was used as retaliation against the scepticism encountered within participants' interactions with professionals and the public, and reduced the self-doubt which had been fostered by experiences of being disbelieved. “Now we've got a label you can turn around and say that's what it is” (97)
Mixed psychological impact    Both positive and negative impact of labelling	Some women shared that they felt relief mixed with fear when a diagnosis was made because they had experienced symptoms that had been very disruptive to their life, and ‘getting diagnosed’ had been a frightening process: Upon diagnosis I actually felt relief mixed with fear. Relieved because the problem had a name, fearful because there is no cure and no known cause (106) …she described the conflicting emotions of feeling a sense of relief tempered by the knowledge that this was a long-term condition: ‘But it’s a double-edged sword, really, because getting the diagnosis is helpful and you know where you stand, and when you talk to people they don't think you are swinging the lead or you are trying to get out of something… but then the flip-side is, oh God, this is me for the rest of my life; it's not going to go away, it's not going to go anywhere' (79)
Psychological adaptation    Psychological adaptation to label and coping strategies/mechanisms	…[diagnosis] eliminated a natural mechanism of coping with stress. This compounded emotional stress related to their diagnosis: “What I would usually do in a situation like that was run…I was extremely stressed out and because the way I cope with stress is to run and I couldn't run” (46) Others focused on strategies for symptom management, including “relaxation,” “sleep,” setting “limitations,” “exercise,” and maintaining a “positive attitude” (107)
Self-Identity    Changes to self-identity following provision of label (can be positive or negative)	Reconstructing a view of self. This construct referred to how, for many adults in these studies, the diagnosis seemed to change their personal identity which in turn influenced the way they engaged with others and their future aspirations and goals (51) Their perception of themselves had changed so dramatically that, even in a state of physical health after having received curative treatments, they continued to perceive themselves as living with illness (106)
Social identity    Changes to social identity as a result of label, including becoming a member/mentor of a support group	Many participants felt that being involved in research allowed them to be proactive, to help advance science, to aid future generations, and to possibly even receive personal benefits (111) Others who had gone public viewed their public acknowledgement of positive [diagnosis]…as a means of reaching others in the community to educate them about [diagnosis] and encourage them to be tested. To these women, disclosure was done out of a sense of duty. They felt they were ambassadors to their communities, even though they risked ridicule and rejection (68)
Social stigma    Perceptions/assumptions of others toward individual labelled	They felt disrespected by people who had heard of the diagnosis but still remarked that they did not look ill enough (89) They experienced stigma because of the way the label changed the way other people saw them (133) Besides the image of abnormality, some informants reported that they are considered to be as powerless as children or sick patients (98)
Medicalisation    Asymptomatic label and understanding/perception of symptoms	“Normal” vs. “Abnormal” memory loss. Although all respondents acknowledged [symptoms], they had difficulty balancing the “everyday nature of [symptoms]” with the new “reality” that rendered what was previously considered normal, a symptom of disease. Diagnosed individuals were forced to incorporate this tension into their new identities as people living with [symptoms] that was simultaneously the same as past experiences and yet decidedly different (111) The invisible disease. An underlying theme that emerged for many women was the struggle to accept a diagnosis when they felt healthy and had no visible signs of disease. This meant they felt that they had to believe an abstract diagnosis, or they interpreted it as incorrect or insignificant. The absence of visual evidence created mixed reactions to the diagnosis among the women (83)
Support
Close relationships    Managing relationships and interactions; support required, offered, and accepted following labelling	Participants also reported a loss of control when their family, friends, or work colleagues engaged in symptom surveillance: I have actually had friends say, “Are you symptomatic? You are talking a lot. Maybe you have got some [diagnosis]?” (107) My boss was really worried that I might have been becoming unwell and, unfortunately, she contacted my psychiatrist before I got there. That was such a breach of confidentiality and just triggered a whole lot of stuff for me.…My boss had said I was wearing different clothes, so it is this fear of, I cannot look different, I cannot wear different things, I cannot have a lot of money or act in certain ways (107) Loving and caring relationships were felt integral to health and quality of life. Some had become isolated at home or dependent on family and friends for social contact (81)
Healthcare professionals interactions/relationships    Interactions with healthcare professionals; support provided; explanations	Some informants felt better understood by health care professionals than by friends or family, whereas others felt misunderstood by the medical profession and society in general. Some informants felt that they were looked upon as being an uninteresting patient, and that once no cure was evident professionals lost patience with them and seemed uninterested and unbelieving (88) They tended to view their health care provider as responsible for “fixing” the problem and did not take responsibility for its remedy. They tended to become frustrated with providers who were not as available as they would like (109)
Emotional support reduced/limited    Emotional support lost as a result of labelling; or support absent but perceived to be required	Others were forced out of their communities; they lost some of their friends and family members avoided direct contact with them. (75) Those patients who had experienced a cancelation of their engagement or a divorce because of the disease felt burdened by a handicap that makes them different from others. (52)
Emotional support increased/maintained    Emotional support maintained or increased as a result of labelling	Participants thought that their partner, family, friends, health professionals, and support groups provided “advice” and “safety.” For one participant, the support of her husband gave her strength and made her feel “empowered.” Participants also commented on the practical and emotional support they received from friends. For example, one participant stated, “They used to come and do the washing for me, bring me homemade bread, and look after the family” (107) Participants consistently described the importance of relationships in terms of hope, recovery and survival. People described how the most significant support they received was from people whom they could trust and who could, as Carol said, “treat you as a person, rather than a diagnosis” (130)
Disclosure    Fear and methods of disclosing label to others (friends/family/employers/colleagues)	In general, sharing the diagnosis with friends and family was not a problem, though several people expressed anger that they did not have control over the manner, timing, or extent to which this information was shared with employers or other health care providers (139) Other participants discussed the fear they held of losing support people if they told them about their illness. There are others I would like to share things with, but I don't want to lose anyone else at the present time and it's a risk I'm not willing to take (108)
Secondary gain    Gains from label	Knowing, naming or labelling one's symptoms was also articulated as an important issue in more practical matters such as obtaining benefits or insurance payouts (99) He interpreted this difference positively in terms of the allowances that were sometimes made for him, explaining: ‘I know that if I wasn’t [diagnosis] my Mum wouldn't let me get away with much stuff' and ‘I think I get a bit of easier work’ at school. So although Dylan indicated that the diagnosis was not significant for his self-identity, he recognised that it had a meaning and a function–in perhaps reducing some of the typical school expectations and the way others saw him (121)
Future planning
Action    Forward planning and decision making as a result of label	Family planning Some women discussed feeling pressured to have children earlier than they would have liked because they were concerned that if they left it later they would be unable to conceive. A few women did have children earlier than preferred, which was seen to impact on their careers ‘Yes, that did put the career on hold. I focused on having the children early… I felt with the diagnosis, yeah, you're always thinking about, you know, that fertility side of it. So, yeah, it does affect your decisions’ (57) …felt that an “early” diagnosis made it possible to anticipate future [diagnosis]-related problems, which allowed them to make choices in life “So you can make conscious decisions: What will I do in life?(…) I am a pharmacist now, so that is not so hard, but what if you have to do something else?(…) If it involves heavy physical activity, you will not be able to do it at a certain point in time. So that is why I feel it is of interest to know” (77)
Uncertainty    Forward planning and decision making as a result of label	…patients indicated that a disadvantage of an early diagnosis was the loss of carefree life and increased worrying about the future. “Yes, because I have two boys (…) and because I was aware of the medical history in the family, and it's like, well, this is what's in store. My uncle had a couple of kidney transplants and he eventually died of heart failure (…) and then hearing the storeys about my grandmother's brothers–three of them I believe, dying at 35 years of age. Okay, we're talking the turn of the last century of course, but it was disheartening to hear, all the same, and although knowledge of the disease has improved, you still think if you have to go through what my uncle went through, that's not easy” (77) Fear of what is to come. This describes deep concern with what the future might bring. Hope hinged on success of treatment or being able to successfully accommodate manifestations of [diagnosis] and was countered by fear of unpredictable consequences. Participants described fears of losing mobility, of being wheelchair bound, of being dependent on others and of further fractures, falls and deformity (81)
Behaviour
Beneficial behaviour modifications    Behaviour modification/changes as a result of label beneficial to overall health and well-being	Some women acknowledged that developing [diagnosis] was the push they needed to begin adopting healthier behaviour patterns. One woman articulated that diabetes was the “ammunition” her partner needed to encourage her to change her dietary habits and avoid [diagnosis] in the future (55) Although the women did not allow the diagnosis to intrude on their lives, they described themselves as being more sensible than they were previously. These minor adaptations allowed them to manage their increased [symptom] risk but still live as normal. They described taking extra precautions against falling, for example, when it was icy, and they asked for aids such as handrails: I'm a little more careful in the garden, where I put my tools, where I put my weed bin so I don't fall over it, things like that. We've got quite a large patio with quite a number of steps. I've had a handrail put there and I'm more careful coming down them, whereas I wasn't before…I'm just a little more alert to the dangers if you did fall (83)
Detrimental/unhelpful behaviour modifications    Behaviour modification/changes as a result of label unhelpful/restrictive to overall health and well-being	Another participant thought that she could not be her “usual jolly self” because she feared others would perceive her as being symptomatic of [diagnosis]. Consequently, she thought she had become more “serious” and “less spontaneous,” and she “[thought] twice” about her actions (107) …drug and alcohol use escalated after [diagnosis]. The substance misuse problems they may have had before “really took off” when they found out they had [diagnosis]: When I went in there and they told me that I was positive, I broke down. I just started drinking and drugging and popping pills. I was devastated. I started severely abusing crack cocaine because it kept the feelings away (70)
	Along with deep sadness came inactivity, lack of motivation, loss of vigour and initiative, and isolation from family and friends: I went through depression. I pushed myself away from the family. I had nothing to do with my kids. My sister had to take care of my kids. I was always in my room locked up, crying. (70)
Treatment expectations
Positive treatment experiences    Perceptions of treatment/intervention (and outcomes) to be positive/beneficial	Participants spoke to healing gained from a diagnosis which made illness evident and treatment possible, thus, reinstating them to life (136) Naming experience brought knowledge that there were treatments, which in turn brought hope and a sense of control (139)
Negative treatment experiences    Perceptions of treatment/intervention (and outcomes) to be negative/unhelpful	Many participants in our sample were troubled by their medication. Significant concerns were expressed about the negative side-effects and the impact of medication on other areas of their lives, such as blunting their creativity, reducing their energy levels, increasing their weight. Some participants also expressed frustration associated with trialling different medications to find the right combination (108) There was a consistent feeling that diagnosis often led to withdrawal of services, that once this diagnostic decision was made then support was withdrawn (130)