The mission of the support group is to provide the much-needed support to the very deserving but the underserved and neglected caregiver of intersex or Androgen Insensitivity Syndrome (AIS). As per NIH, 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.
A minority within a minority
As a caregiver for a decade of a AIS patient, I hunted all over the web for support groups for my situation as a caregiver. I found several support groups for caregivers devoted to various traumatic conditions, terminal diseases, day-to-day ailments, and so on. However, I did not find anything for caregivers of AIS patients. I found support groups for AIS patients, I also found support groups and information for parents of AIS patients but nothing for the partners of AIS patients. As a caregiver, it is critical to have a friend to talk to, a shoulder to cry on, and most importantly, someone with experience in the world of AIS to explain truthfully what was happening to his loved one. Let us make this a positive experience for individuals to voice their frustrations, thoughts and experiences while finding a source of comfort, knowledge and assistance. When we can overcome the secrecy and stigma and freely talk about intersex patients and family,we can start addressing some factual concerns.
As caregiver of Androgen Insensitivity Syndrome (AIS) patients, it is a very humble thing to do. To ensure there is sensitivity to everyone involved, it is important to be truthful with humility, civility, and dignity. The primary objectives of the Caregiver of Androgen Insensitivity Syndrome (AIS) Support Group are:
1. Inclusive palliative care type approach for patient and family including spouse caregivers and children.
3. In the best interest of the child, conduct a scientific study to evaluate if a “waiting period” should be established to be the primary care provider for infants immediately after adult AIS or Intersex patients :
a) have sex reassignment surgery.
b) have just started treatment with Hormone Replacement Therapy (HRT).
c) and are overcoming severe personal trauma and crisis.
4. All caregivers should be assigned an independent advocate/counselor to explain the condition and its effects to prevent them from becoming a patient.
5. Caregiver feedback should be sought in devising the hormone replacement therapy and associated behavioral symptoms of the AIS patient involving severe trauma, depression, and crisis.
6. Seek medical data or scientific basis to do sex reassignment surgery and hormone replacement therapy during a marriage when the intersex patient is already in their 20s or 30s. There is proof to avoid sex reassignment surgery (SRS) as we have been advocating all along based on our experience as caregivers. Now UN and a scientific report backs our claim.
Please sign the petition if you support the objectives.
The Issue – Who Cares?
There are lot of support groups for caregivers for various ailments. However, the secrecy specific to AIS patients creates its own unique set of conditions for caregivers. 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 AIS patients are a miniscule minority and a highly underserved group within spousal caregivers. It is hard to find a precedence or any statistics.
- Forbidden to talk about their personal issues freely.
- Silenced as “insensitive” or “extremist” or some other discriminatory term to fit the special interest group agenda.
- Issues experienced by caregivers of AIS patients are drowned out and never allowed to surface, let alone addressed.
- The unknowing partners of AIS patients who are unprepared caregivers are a minority within a minority and need the support and help.
The objective is to give a platform to voice very personal and emotional issues. We should care because other caregivers are often called survivors, warriors, and so on when taking care of a loved one and get the deserved support and help.
Sensitivity To All
From what I have experienced and learned, AIS is not something openly discussed and talked about. Instead secrecy, intimidation, propoganda, and falsifying medical records are utilized. As a result, finding the much-needed support is difficult for AIS patients. It is even more difficult to find the much-needed support for the caregivers of AIS patients who happen to be their partners. It is my personal belief that it is better to educate and spread awareness than to hide and lie. We should always maintain human decency and respect the other person and be sensitive to their needs. However, neglecting and ignoring the caregivers’ needs is insensitive. Who is taking care of the caregivers? If caregivers are also forced to hide and lie, no one will never know their pain and suffering and as a result, they will never get the much-needed support they need. Every minority needs to be heard and be served. This is not about being insensitive to others, it is about being sensitive to all.
Realistically, the partners of AIS patients would broadly fall into one of two categories. Either the AIS patient was honest with the partner and was made aware about the sensitive issue of AIS before getting into a long-term relationship. Or the partner was lied to and now has to deal with the multiple consequences. The latter group, the unknowing partner turned caregiver is a very small and unique group. The mission is to find and support this very small group of people. Even if there is only one other person left in this world. One human life saved is worth it.