Caregivers and patient advocates who research and learn about their loved ones condition find information from every possible source. Gaining as much information as possible is key when beginning the caregiving process. But what if you couldn’t find enough facts because the health condition you are researching is underrepresented, and sometimes, misrepresented? This is how a caregiver for an intersex patient feels.
Hoping to spread more knowledge and influence the world beyond those in the support group, Caregiver of Androgen Insensitivity Syndrome Support Group (Caissg) is a unique caregiving community focused on Androgen Insensitivity Syndrome (AIS) and Intersex support groups. According to the Genetics Home Reference, AIS is a condition that affects sexual development before birth and during puberty. There are two forms of AIS: Complete and Partial Androgen Insensitivity. Representing a “minority within a minority,” Caissg is serving the AIS and Intersex community with support and care and advocating for further support for minority health communities.
What got you involved with your Health Activism? Tell us your Health Activist story.
As a young, male, spousal caregiver of an intersex patient, every door I turned to was blocked. It felt like it was a crime to be a spousal caregiver of intersex. We need to change that. Being intersex is very traumatic having witnessed it first-hand but discriminating against the caregiver because of their relationship/gender with the patient is not right either. Because of the secrecy and stigma involved around intersex, health care professionals would not divulge the truth and details about the condition to the spouse citing privacy concerns. But had the same patient been under the care of the parents, it would have been different. There are support groups for parents but none for spousal caregivers of intersex. Is the message then not to marry an intersex patient? There are other issues due to intersex. For example, infertility. Just like there is no “I” in spousal caregiving of intersex, there is no “I” in an infertile couple. Infertility is genderless and it brings its own set of trauma, anxiety, non-clarity to any individual wanting to have a child. Unfortunately, both intersex and infertility are dealt with a lot of secrecy and stigma. By becoming an health activist, we want to end the secrecy and stigma with truth and respect. We want to inform the medical establishment that they are wrong in performing these surgeries on intersex patient during a marriage and there is no medical basis for it. They should stop this archaic 20th century practice. We want to inform the legal system to pass equal laws for people like us who pursue infertility options.
What are the surgeries you are opposing?
There is an article you can find at http://www.caissg.org/8-ways-caregiver-intersex-ais-treatment/. The specific surgery we are calling for a stop on is sex reassignment surgery in a late 20s to 30s intersex patient. This is where the male testes are surgically removed and the intersex patient goes on hormone replacement therapy. What is the medical basis? There is no scientific data to establish this need. There are plenty of intersex patients living well into their 60s and 70s without the surgery with no health issues related to not having the surgery. Here is another link discussing this controversial treatment. http://www.katrinakarkazis.com/writing.html
Especially, having this surgery during a marriage is devastating given the privacy and secrecy imposed on the spousal caregiver. Is the message then not to be in a relationship with an intersex patient? The medical system needs to look at it with an hollistic approach with the best interest of the patient. Do the risks outweigh the benefits of having sex reassignment surgery during a marriage and keeping the spouse in the dark? Any relationship is based on trust and the medical system should stay out of it. Truth is a better medicine.
This month we’re focusing on advocating for another – what are some of the main challenges members of your caregiving community face?
Secrecy and stigma. We do not have accurate and correct information of the diagnosis and best practices. There is deep-rooted, decades old strategy of concealment based approach in the medical community. We have to hunt for scientific data on our own and we are not trained health care professionals. The secrecy and stigma forces us not to talk openly resulting in lesser information. For example, if this was a case of breast cancer or testicular cancer, we would have a lot more information, support and resources. Why can’t it be like that for intersex?
What are some tips you have for overcoming these challenges?
An inclusive approach where both the patients and spousal caregivers have truth much like a palliative based approach due to the severe trauma.
Inform the medical system to either provide scientific data or stop performing intersex surgery during marriage, typically when intersex patient in either in late 20s or 30s.
Inform the system that under any circumstances, it is NOT OK to misrepresent facts on medical records or withhold information from a spouse. What are the bioethics?
An independent counselor/advisor for the spousal caregiver to look out for their best interest much like in the case of organ donation.
If there is an absolute need for intersex surgery during marriage, spousal caregiver feedback should be sought just like parental caregiver feedback is sought for the Hormone Replacement Therapy treatment.
What else would you like members of our community to know about your community?
We want to learn and seek support from the community as a whole. The secrecy and stigma are so bad that it is like taboo to even talk about the condition let alone the issues it causes. It reminds us of growing up in 1980s and 1990s when talking about being gay or HIV/AIDS was a taboo. In the 1970s or early 80s, when spousal caregivers used to talk about their Alzheimer spousal patient, it would be considered rude. Today that number has swelled so much by being open that Alzheimer caregiver support groups are one of the best resources for information. We want to be able to talk about our issues due to the medical condition openly without secrecy or stigma or taboo so that we can get to a solution about the issues.
Any upcoming events/projects/plans that you’re excited about?
We are constantly redoing our website and have a blog roll at http://www.caissg.org/blog. We have received a lot of support through various organizations and are continuing to educate and raise the awareness. We are working on an international guide for LGBTI and their caregivers. The laws simply do not reflect the reality which causes more traumatic issues in addition to the traumatic medical condition.
Thank you to Caissg for sharing your story with our community. There are many challenges that go along with being a caregiver, but it is clear that changes should be made to the view of caregivers for minority conditions. Caissg is working in effort to expand the knowledge of this condition and make caregivers feel less alone. Follow @caissg and check out the website www.caissg.org