Table 2.
Challenges of XXY
| Challenge | Now n (%) | Whole Life n (%) | Quote(s) |
|---|---|---|---|
| Infertility | 53 (31) | 46 (27) | “The worst moment was when the doctor explained the infertility aspect. My thoughts and dreams ended at a full stop. I have become a fatalist.” (33, 14a) “For me, the worst part has got to be the sterility. I always thought I would naturally have a family eventually and raise kids. But when I found out I was sterile (and tested for certain), I became further depressed for quite a long time—thinking there was no way I’d ever find a woman who would want me with such a genetic “defect.” It’s also not so much that I can’t father children, it’s more that I had no choice in the matter.” (Age not reported) “The worst part was finding out at such a young age that I could never be what my mother had wanted me to be—that I could never have children.” (Age not reported) |
| Psychological Impact | 46 (27) | 53 (31) | “Dealing with depression is like a roller coaster—endless.” (28, 16) “I have suffered from anxiety and depression since I was about 10.” (59, 57) |
| Appearance/Body Image | 35 (21) | 8 (5) | “Feminized body proportions, breast development, and small testes made adolescence and early adulthood (especially activities such as PE class, tennis, etc.) socially challenging. I still have to compensate.” (54, 45) |
| Learning Disabilities | 27 (16) | 39 (23) | “The worst part has been dealing with activities that require auditory processing, such as trying to process listening exercises in foreign language class, listening to comedians, or even responding to open-ended questions such as the popular greeting ‘how are you?’” (19, prenatal) |
| Social Challenges | 22 (13) | 21 (12) | “I was teased by other children until I graduated from high school. I had difficulty making friends because I was shy, had a poor self-image, and didn’t fully understand the people around me.” (45, 35) “XXY has had a profound effect on me socially. I am still very shy and only have a few close friends.” (46, 45) |
| Testosterone Treatment Challenges | 16 (9) | 4 (2) | “Getting testosterone levels to work for me. Different doctors have different opinions on what’s the right amount for my desired outcome.” (56, 21) |
| Co-morbidities | 13 (8) | 8 (5) | “The health problems—like osteoporosis.” (31, 15) |
| Romantic Relationship Challenges | 13 (8) | 9 (5) | “The worst part is not having a long term relationship and feeling unloved.” (42, 30) |
| Misunderstood by Others | 10 (6) | 10 (6) | “I’ve felt very misunderstood for most of my life and still do.” (32, 27) |
| Challenges with Health Care Providers | 8 (5) | 24 (14) | “Lack of knowledge by medical professionals and being treated differently based on outdated and inaccurate information.” (34, 14) “The failure of doctors to explain or listen. I’ve had 30 years of ‘it’s not my field, you know more than I do.’” (67, 36) |
| Late Diagnosis | 9 (5) | 15 (9) | “Finding out at the age of 28, even though all of the symptoms have always been there.” (28, 28) “Had I known about it much sooner, I could’ve gotten the help that I needed.” (46, 45) |
| Employment Problems | 4 (2) | 9 (5) | “I don’t have a career and I’ve been struggling to even remain employed - which largely comes down to my learning difficulties. Now, I suspect, too, that there might be other things going on as well - I can bet that there were some interpersonal “signals” that I completely don’t see or ignore or whatever the heck goes on - but how can I fix what I can’t observe?” (44, 35) |
| Disclosure Challenges | 2 (1) | 10 (6) | “Keeping it a secret. That shame was instilled early on.” (34, 14) “Explaining to a new partner anytime I meet someone what I have and that I will never be able to have children.” (22, 13) |
a
(Age, Age at Diagnosis)