Androgen Insensitivity Syndrome (AIS) is a condition that affects sexual development before birth and during puberty. People with this condition are genetically male. They may have female sex characteristics or signs of both male and female sexual development. Caregivers of intersex or AIS patients, a rare condition, are a minority within a minority. Given the secrecy and lying around AIS, the spousal partners of a AIS patient who may be unsuspecting and unknowing. These caregivers are male and tend to be a “role reversal” from the norm. As per a recent survey, there are 65.7 million family caregivers in the USA and 34% of all caregivers are men and the average age is close to 50 and less than 4% are young to middle-aged and less than 13% are spousal caregivers. Thus making a young to middle-aged, male, spousal caregiver a minority within a minority. In addition, the unknowing caregivers of intersex or AIS patients, a rare condition, are a miniscule minority and a highly underserved group. It is hard to find a precedence or any statistics. Does that mean the young, male caregiver should not get support? It seems like it is a crime to become a young, male caregiver due to the severe lack of awareness and support. There is plenty of support and resources available for AIS patients and therefore is not the focus here.

What is so unique about the unknowing caregivers of intersex AIS patients who are their partners, unlike parents or family?