Intersex diagnosis and treatment is in need of a major revamp. There are several organizations of intersex people and intersex patients themselves who are also advocating the same thing. The protocol followed is called Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People and is produced by the World Professional Association for Transgender Health (WPATH) and the protocol is available here. No one has asked the young, male, spousal caregivers of intersex people. It is ironic that the recommended treatment plan involves a lot of psychosocial counseling only for the patient but none for the male, spousal caregiver. Is the male caregivers’ health at risk from the trauma and shock of relentless caregving? What are the bioethics of treating a patient at the cost of the health of the caregiver? We call to action to provide accurate diagnosis and end the cycle of secrecy. What are the human rights of the caregiver? Dr. Brian Goldman, a TED Talk speaker has shown great leadership in discussing medical facts truthfully.
Campaign for Truth and Informed Consent
Imagine a medical condition like Alzheimer’s. While there is no known cure, the best cure is to rejoice the moments there are. There is a lot of information and resources and support groups for caregivers of Alzheimer’s. The inclusive approach makes the experience so much better both for the caregivers and the patients. Isn’t truth the best way for all caregiver-patient relationships regardless of the medical condition?
- There are tons of articles on how to deal with intersex diagnosis and the related trauma and psychosocial issues. So we will not discuss that here.
- There are tons of articles on how to effectively use sensitivity with intersex diagnosis. So we will not discuss that here.
- There are tons of articles on support and resources available for intersex patients and their parents. So we will not discuss that here.
- There is hardly any information for caregivers on intersex diagnosis of a loved one, the person they love, trust and respect who lied to them. We will discuss that here.
- In a reputable medical research journal paper, doctors concluded that “Patients with CAIS need proper counselling and education according to their psychosexual make-up and sociocultural factors.” But NO counselling for a traumatized spouse of CAIS who discovered the condition during a marriage? Why there is no HELP and SUPPORT for a spouse caregiver of intersex will be discussed here unless the message is that the spouse of intersex is WRONG and should not marry an intersex person?
- Informed Consent – It becomes very hard for caregivers of intersex diagnosis to get correct and accurate information. How are they able to provide an informed consent?
- Secrecy and Lying – There is a strategy of secrecy and concealment based approaches which affects the unsuspecting intersex patients and their caregivers the same. The caregivers also have to live a life of secrecy and stigma and is as much a psychological issue.
In a recent article, female rape victims were labelled “crazy”. The military is a great organization and we respect every service member for their sacrifices. The article suggests the “pattern” of a “a sexual assault, a command dismissive of the allegations and a psychiatric discharge”. No one is ready to take the victims seriously. We feel very sorry for the victims as young, male, spousal caregiver of intersex people and can empathize with them from the treatment they have got after the fact. For us the “pattern” is of “institutional secrecy and lying, false stereotypes of bias and intimidation against men, and a discharge of no support or assistance let alone acknowledging the facts. We hope someone is listening and see that a fair, scientific study is warranted to help cope caregivers of intersex patients on how to sensitively cope with the intersex diagnosis of a spouse and the personal trauma. As spousal caregivers, we are asking for the same access to information, resources, and dignity as parental caregivers of intersex patients.
Other Medical Diagnoses
Years ago I went to an eye doctor. He took out a 3D cross-sectional view of the eye. He did not think I understood what an eye is like cornea, retina and so on. Maybe if you remember your biology and are a little more inquisitive than the average person, you would know how an eye works and what are the inner parts of an eye. The eye doctor explained to me, a layman, in all sincerity, the different parts of the eye. The cornea, the retina, the “white part” and the “black part”, and the cartilage tissue and so on. It was interesting to know but it also explained to me why I should wash my eyes and how to wash them. I also understood why my eyes were red. I also understood why sometimes the eye drops I put in my eyes may travel down to my throat and I get a bitter taste of the medicine. Very logical. And I am not an eye doctor. All I had to pay was my co-payment of 10 bucks for this highly scientific and truthful lesson. The point is the doctor has to trust the patient to be able to absorb logic and be honest and truthful to them using props.
I can repeat the similar story above I had with my dentist once. He had taken a prop of a “generic jaw” and explained to me about my bite. Also explaining to me the difference between a crown and a filling and a root canal and why/when does someone need one. I am just a layman but using props, by taking the time, and by being ethical, this doctor gave me an honest, hollistic, logical explanation to me about the diagnosis.
I can repeat the same experience when I visited an orthopeadic surgeon. The doctor was very ethical and gave a good explanation of the diagnosis and was very honest and ethical about the diagnosis and our concerns. Thats how it should be.
Thank God but I have not had to go to a heart surgeon till now but I am pretty sure they use props and are honest about the diagnosis. I am sure there are more severe and more traumatic medical conditions in this world other than intersex. How are those diagnoses done?
The point is doctors know how to be ethical. The question becomes who are they being ethical to? Themselves or an “institution” or public opinion? And when mistakes occur like discriminatory systemic practices against a spousal caregiver of intersex Vs. parental caregivers of intersex, do they admit the medical errors like Dr. Brian Goldman for BETTER medicine or do they continue to perpetuate their medical mistakes? Are their actions benefiting medicine?
Honest Intersex Diagnosis
I am no doctor and neither plan to replace one. But common sense and basic human decency for all is something we can all agree on. I believe being a doctor is above all a very noble thing to do. They are some of the smartest people and they have to delve into very complex issues on a daily basis. Seems like there is no reprieve for a doctor and at the same time be able to go home to a loving family and help provide for them and protect them just like any other human being. In my years as a patient on multiple different occasions, I have always struck a good chord with my doctor. I have also witnessed that good doctors practice good ethics and do not lie or mislead regardless of the diagnosis. Then there is another side. Semantics, or choice of words is immaterial, their goal to use a strategy of “secrecy and lying” is at play. When an educated person, a doctor, decides to engage in a strategy of “secrecy and lying”, a layman is done for. First the layman has no idea they are being manipulated. Second by the time the layman figures out the manipulation, it is probably too late because the doctors have laid out the worst case scenarios. I wonder are these doctors who engage in a strategy of “secrecy and lying” more like “magicians“? You know, look this other way, while I do “magic” in the opposite direction. The point is when an educated doctor along with a system decides to engage in the strategy of secrecy and lying, a layman has already lost. The layman is living in a fantasy world if he/she thinks he can change the system. All the documentary evidence, the established certified protocols, the public outcry is against the layman. Either the layman can conform to the strategy of “secrecy and lying” or will be punished, marginalized, oppressed until the doers feel safe again to continue the strategy of “secrecy and lying”.
Intersex Diagnosis Now
Why can’t we have the same diagnosis principles for intersex diagnosis as with other medical conditions? Here is how a diagnosis goes today. I am very sorry to tell you but you have Complete Androgen Insensitivity Syndrome (CAIS). This means you are infertile and need surgery to remove the gonads because they pose a risk of cancer. How can I help you? Can I get you some water? WHAT?!?!?!?!?!? Polite people also lie and violate other people’s human rights.
To the layman, what is Complete Androgen Insensitivity Syndrome (CAIS)? Have you ever heard of it before? Is this like a fever or an heart attack that you know someone around you with a similar condition or is it a rare condition? As a layman, what is your exposure to this medical condition? As a layman, what is your experience in dealing with this medical condition? As a layman, what are your next steps? I can fill up the rest of this page with a laundry list of questions but I think you get the idea. CAIS or its full-form is gibberish to the layman. If I had not hyperlinked CAIS, how many of the educated reading audience here would have understood what I was talking about. I will concede that the words are part of the English language but what do they mean? You just sit there in an awkward, bewildered eureka moment that on one side you have answers as to why one is infertile but at the same time it opens up so many other questions.
As a caregiver, my most sincere appeal to the medical industry is to start using honesty and props when explaining an intersex diagnosis. It is already being done successfully for so many other medical conditions. Using euphemisms and trying to be politically correct is confusing the diagnosis. As a medical health practitioner, the paramount goal should be a good understanding of the diagnosis and then everything else.
It is even more ironic that part of the treatment plan for intersex patients is psychosexual counseling to deal with the trauma and crisis. What about the trauma and crisis caused because of a confusing diagnosis in the interest of a “secrecy and lying” strategy? The secrecy and lying make the medical condition worse than what it really is. Is this helping or compounding the issue?
We have not even begun to dig into the other issues that come up later because of a strategy of secrecy and lying. The sincere appeal is to please stop this. Education and creating awareness is the right long-term solution. With internet at everyone’s fingertips, using a misleading or confusing strategy will unfold very fast.
Imagine a democratic government of a country announcing to its citizens, we have been attacked, we are at war and then do nothing. I think it is common sense for the citizens of the country to expect the government to respond reasonably to the attack and then communicate honestly to its citizens. Doing nothing and not taking a hollistic approach is not the right solution and neither what the citizens reasonably expect. If there is “collateral damage” and both governments decide to “squash” the incidents of attack in the best interest of the two countries, who takes care of the loved ones who lost their lives as part of the “collateral damage’?