CONSTRUCCIÓN DEL DIAGRAMA DE CASOS DE USO

Loss

Some of the participants explored the idea that people who enjoyed sexual activity prior to impairment experience a greater negative impact from their lack of sexual activity now. Zack and Betsy feel the loss of sexual well-being is more acute for them because they once had an active sex life; they have a sense of loss both about physical function and sex. Zack said that:

At the moment it is as such ‘cos I can’t do anything. I mean, if I think back years ago when I was first married we’d have sex here, there and

everywhere. But I don’t know, but, and you never ever forget what you've done sort of thing... no. Um, it’s something I very much miss... sex and whatever, the normal intimate things so... I can do nothing about it so it goes no further. And if I had my health then I could do something about it. Which at the moment... I've got what I've got and I am stuck in here (the adapted extension to his home).

Betsy reflects on the loss of aspects of her relationship due to the changing roles brought about by physical change:

It is very hard if you’re asking someone to help you with the shower to actually have a sexual life with them. Where are the boundaries? I honestly think that it is an impossible situation, which is why I decided to reply (to consent to participate). To have a male who is a carer, who is also a

husband... I think it puts them in an invidious situation, both the person, the cared for and the carer.

Betsy states that her physical change interferes with opportunities for affection:

And then again how do you hold hands when you've got two hands on crutches? I can’t practically; it’s not going to work.

This loss impacts on the external signals of belonging which people in relationships might share such as holding hands, and the physical closeness this contact brings.

The experience of impairment is unique to each individual so it is inappropriate to rigidly categorise some characteristic or experience as being particular to only people with congenital impairments or those whose impairments are acquired. However, Zack and Betsy both highlight their personal perception that there is a definite difference of experience between the two groups of people, and this reflects the debate within the literature (McCabe and Taleporos, 2003; Hwang and Johnston, 2007).

Missing out

Exploring the idea that she ‘deserves’ a relationship Amy explains that:

It’s been difficult because I do feel it is time, it’s been a long time coming. Other people my age have had sex, they’ve had boyfriends... and I’ve just, I haven’t ever.

This makes Amy feel:

Really depressed sometimes. Just the fact that I have no potential, if that makes sense.

It is as though Amy’s life is deviating from the expected social script and this caused internal distress (Wiegerink et al., 2006). She wants to be like her peers; her desires are the same as the majority, and her frustration is evident from her comments. Penny expresses similar feelings of despair experienced by the

patients with whom she volunteers. She, too, has faced despair, but says she was supported by her partner:

When Jim (Penny’s husband) came in to see me I would say to him: ‘Just forget me, go and find somebody else... you don’t want somebody who can’t move their legs, or, you know, we don’t know what sex is going to be like.’ He would say ‘I just love you, it doesn't matter about your legs, I love you, it doesn’t matter about any of this, and we will get through it.’ And we did get through it.

These comments are lived experiential illustrations of the effect of relationships, and their absence, on well-being (Markey et al., 2007; Esmail, 2007). The

participants recognise the value of such positive relationships but perceive internal and external barriers to finding such relationships.

Fear of rejection

The fear of rejection is significant to the participants without romantic relationships. As already referred to, Amy concludes that for her it is better to avoid rejection than risk her self-esteem, while for Kevin, fear of rejection:

…is what has stopped me so far, but there will come a point...

His comment exposes a dilemma between powerful forces of fear and desire. Kevin states that what he considers a biological compulsion to reproduce will

overcome his fear as:

We’re hard wired to produce little ones, we are just animals that,

unfortunately, can reason. Which makes life even more... It’s really crap because you can see where you are going wrong. And you end up kicking yourself for ages afterwards. But... I hate being lonely. But part of me is thinking so nobody’s... or I’m not going to find someone that I love. And I don’t, my past experience; I don’t just want to settle...

His comment relates to other accounts in the literature, which explore the compromises that physically disabled people may make in relationships. Such compromises can expose individuals to poor quality relationships due to the

perception that physically disabled people have limited choice in their relationships (Owens, 2015). Kevin expresses the value he places on having a multidimensional and mutual relationship, rather than just sex. He has felt used by people, or put in a position where there is unequal commitment:

I was doing all the supporting and I wasn’t getting anything. This seems to be a pattern, which I... people who are very needy, with problems. But you’re not going to find anyone with no problems.

The internet has introduced new opportunities for establishing relationships. Social media offers links to like-minded groups and there are dating websites dedicated to disabled people (for example, Dating4Disabled, Disability Dating and Special

Bridge). However, Kevin indicated that even these opportunities posed difficulties for him:

I mean, on the internet it’s, some slight flaw, there are so many sweeties in the sweetie shop, right there’s a slight scratch so put that one on one side. I’m not very good at selling myself. You need, ultimately that’s down to confidence. But at some stage, you see, it comes down to what do you do for a living, and then it’s, well, why don’t you work anymore?

These comments indicate that even with opportunities being made available not everyone can make use of them because of their own lack of self-confidence, which compromises their capacity for well-being.

Eroded confidence

Kevin identified a lack of confidence as his primary obstacle to making relationships:

My confidence... my confidence is... I don’t want to go through this again... the last time I had sex I felt used and it was horrible. Part of me is thinking sex is the problem.

He says he could go to places to meet people but:

There’s always that thing, I don't know... I’ve no problem meeting new

people. But when it comes to the romance side of things, that’s when it, yeah that’s the thing.

Amy, too, identifies her lack of confidence:

If I let my inner self-esteem issues rule my life I wouldn’t go outside.

Jack, too, raised body confidence and how his physical and mental frustrations are interwoven:

I want to fuck. I feel stress. I feel different. Hard head, inner turmoil. I feel stress and frustration not having a sexual relationship.

These comments illustrate the crucial role that emotional well-being has in the ability to take up life opportunities leading to life satisfaction. The lack of self- confidence turns manageable challenges, where meeting the challenge leads to the positive reward of personal development, into barriers perceived as negative and wholly insurmountable.

Summary

The impact of sexual discontent mirrors that of sexual well-being: the physical and psychological dimensions are again drawn together in physical and emotional frustration and dissatisfaction.