| Feeling left behind (isolation) |
“I was diagnosed at 23. So, that's why I say I ‘missed out’ on that 17–20 (years of age) physical and emotional development. I think that is where people miss-out on a lot … and not being able to catch up.” “Watching your sisters, your younger sisters and younger cousins and watching them pass you while you are left behind right now is still emotionally traumatic. It's just the little stuff like that … it all builds.” “I was dependent on a nurse who injected my treatment twice a week, and people all around me experiencing their young adult life … independence from parents, sentimental and sexual relationships, a night out … all that discovery was out of reach for me for unfair reasons.”
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| Fear of being exposed |
“Fear of exposure was the biggest thing for me … especially when I was younger in middle school and through high school. I was afraid to go into the bathroom and pee in the urinal.” “(around 15 years old) I was forced to take gym class and I feared that I would be noticed. I knew I would be ridiculed mercilessly if anyone found out. I vowed that I would not use the shower after gym class no matter what.” “(communal showers) It was like doing anything to get out of a shower … I would try anything. In fact, I would just come out of the gym and just not shower. You know, just put my clothes on over my gym shorts and stuff like that. But it's that … fear of exposure.” “I would purposefully forget (gym clothes) so I wouldn't have to take physical education so I wouldn't have to shower. And the teacher would go to the lost property and find a spare and try to force me to wear it so that I could take part. So, I would be in detention … god knows how many times.”
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| Hiding |
“(during teen years) I was doing my best to remain as inconspicuous as possible and not have my condition discovered … nothing else mattered.” “You spend so much of your adolescence and your late teens, 20s hiding stuff. You are hiding the fact that you can't smell, you are kind of covering over that, you are hiding that you don't want to shower, it's just so much hiding that there's almost an emotional reticence. And, I think that translates into relationships too.” “For me it has been shame. Yeah, that has been the hardest part. And so … I kind of isolated myself, staying indoors, and that has led to a kind of social anxiety. So, I don't really have any friends really … that's given the most impact on my life.”
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| Body shame/poor body image |
“I haven't been intimate with anyone in over 10 years. I don't have any friends, I don't have a girlfriend … I have kind of accepted that I won't have any girlfriends or friends. I'm just ashamed of my body.” “(regarding dating) You think down the road and wonder if this eventually goes anywhere … I don't want to undress in front of this person.”
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| Body shame/poor body image |
“My biggest thing was about having Kallmann's (CHH) was genital size. That's the only thing that was affected … and been an issue. Which I know is very superficial and is probably a bit silly, but that's me. It's always sort of there, you're always sort of consciously aware of it.” “There's extreme shame about having small genitalia … it's just extreme for me.” “We are probably hung a bit less-well than most people. It can be a bit … you know, if a woman … if you drop your trousers and a woman bursts out laughing, it's just devastating. What do you do?” “I was always ashamed of that stuff (body and gynecomastia). It was insidious, sometimes I was seen as a girl … you know, is that a boy or a girl?”
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| Low self-esteem |
“I felt ashamed really … I withdrew from it, from everything really. So, it's the same I don't really have any friends really, not a lot of social contact or anything like that.” “It (CHH) is always with me … very, very low self-esteem, massively low confidence … you know, I have done all the educational stuff, I've got a good job. Even after 20+ years with the same company, my confidence level at my work is still very, very low. I tend to mask it sometimes, in that sort of situation but in reality, I'm in quite a fragile state … it doesn't take much to sort of push me down.” “For a long time even after starting treatment, I knew I was physically as normal as a man can be … (but) I was unable to seduce a woman … very difficult to deal with the potential rejection … still thinking she would see a kid who should not do what he is doing. I had a total lack of confidence in this aspect of my life.”
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| Lingering effects |
“All of those things are seeds for psychological damage. I mean the stuff occurring at that stage builds up and builds up and builds up over the years … it lingers for sure.” “You may have all the outward appearances (of puberty), but here (pointing to head) … as far as I'm concerned, I'm still different. It's almost as though one day, someone is going to see right through it, and they'll know … it's that fear.” “Basically as a Kallmann (CHH) patient I spent most of my early adult life building barriers and walls to others to avoid being emotionally hurt and keep mental sanity. It worked … but later on in my life, these survival skills were totally irrelevant and became the main problem.” “I still have a hard time with public nudity … I wouldn't join a gym that had an open shower … so like there are even these lingering psychological that affect me even today but they are not as severe as when I was younger.” “I'm wondering is if we have some overlap with a PTSD (posttraumatic stress disorder), there might be some things that are still things that will trigger flashbacks.” “I was forever looking back at as far as I could see … a lost 16 years. As I've grown older, it's not just the 16 years. There's actually a lot, lot more than that. The older I get, the focus is perhaps not on looking back but looking forward. And that … is just as negative for me sometimes as it is looking back. As far as I'm concerned, it never, ever leaves me …”
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| Mediating factors |
“I have found the groups on Facebook and that, you know … starting to talk to people. That's the only thing that has really helped me so far for coming to terms with it (CHH).” “It wasn't until I found other people like (patient community leader) and such that I kind of filled in the blanks a bit. It was quite isolating for me and I had no one to talk to and I felt like I was the only person in the world to have this problem you know?” “The two major things for me have been having somebody love me and not see as no different from any other man … and this, meeting other people face to face, being able to talk and email people and just … you know … (other patient) has been exceptionally caring to me.” “When I was in my teens and 20s it was harder … it does get a little easier, but still there's a lot of emotional scars.” “It's like, you can answer those questions (for young CHH patients) and say: look, it's going to be tough for a couple of years … but, you know, it's going to get better.” “Learning about it (CHH) made me feel that Kallmann (CHH) is not such a big deal. But in my case, it was not enough and the psychotherapy aspect helped a lot … I'm not sure I'd be as satisfied without.”
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