Intersex Surgery During Marriage

July 9, 2012 by survivor

Marriage-truth-breakIf you are reading this, you should ask yourself what is marriage? The fundamental building block of any marriage is trust and love. Compassion, family, children, home, in-laws, BBQs, parties, socializing, vacations, etc. come later. The marriage vows that we all recite has sentences like “till death do us apart” or “in sickness and in health” all of which are great sounding. How many stick around to test these vows? Statistically, 50% of marriages end up in divorce for whatever reason. As per a recent study by Fred Hutchison Cancer Research Center, women are 6 times more likely to be divorced or separated when diagnosed with a major illness. This begs the question should intersex patients have sex reassignment surgery (SRS) and hormone replacement therapy (HRT) during a marriage? There are bioethics issues that need to be dealt with in an intersex marriage.

Intersex Marriage

Unfortunately, intersex has been dealt with lot of secrecy and stigma. As a result, an intersex person already finds it difficult to find a person who is compassionate and loving to marry with. Hopefully, the future will be different by raising awareness and education. The flip side is half-truths and to not disclose the intersex condition to the future spouse. This approach is a BIG no-no in any marriage because marriages are built on trust and love. As a married couple, they also want to have children. Adoption is the most common option but what if it is not possible. The next choice is to look into fertility options. As they begin their quest for fertility options, a doctor reveals the intersex condition and advises sex reassignment surgery followed by hormone replacement therapy. It is likely the couple is young in late 20s or 30s. Neither of them having much clue about effects of the treatment. Is there any medical data or scientific basis to have the sex reassignment surgery and therapy for an intersex patient while in your 20s or 30s? Do the benefits outweigh the risks during a marriage?

Spouse Caregiver of Intersex

An intersex marriage is fragile. Typically, parents are caregivers of intersex patients when they have sex reassignment surgery and go on hormone replacement therapy. Parents also have access to medical resources and information and support groups of their own to help and guide them through the process. Due to privacy laws, spousal caregivers of intersex patients do not have the same access. The spouses are left out. Worse, the spouse has no resources or information for their own support and help. The intersex condition is traumatic for the patient. What about the spousal caregiver who is left in the dark. Is there trauma? The spouse has to withstand all the issues that come along with the medical treatment but there is no feedback mechanism. Because of privacy, the spouse is not allowed to go to the doctor visits for the intersex patients. How does the doctor get a complete assessment of the therapeutic treatment? Hormone Replacement Therapy is NOT an exact science. Multiple factors are evaluated to arrive at the correct dosage for each individual. Without a 360 degree view of all the people involved in the patient care, how can one medically and scientifically arrive at the right therapeutic solution? Had there been parental caregivers of intersex patient, they would be allowed to participate in the feedback mechanism. So why is the spouse of an intersex patient being discriminated against? That is an oxymoronic statement, isn’t it? In a first-of-its-kind case, a law suit was filed by the parents of an intersex child where a sex assignment surgery was performed on an intersex infant child without their consent. Does the spouse of an intersex person who did the sex reassginment surgery (SRS) during a marriage have EQUAL rights?

Best Interest of Intersex Patient

Everyone deserves to be happy. The best interest of the intersex person is to be happy. If they have found a spouse who is happy with the intersex person, then why bother? The doctor’s best interest is the well-being of the patient. If the medical system chooses to do the sex reassignment surgery during a marriage then they should make it an inclusive approach for the spouse. The spouse also has some of the same symptoms including but not limited to trauma, infertility, secrecy, stigma and dealing with the sex reassignment surgery and hormone replacement therapy as a caregiver. It would be good to see medical data or a scientific basis to show benefits of doing sex reassignment surgery and hormone replacement therapy in 20s or 30s. There are several intersex patients who have lived well into 60s, 70s and died of natural deaths without having had sex reassignment surgery or hormone replacement therapy. If it aint broke, don’t fix it. By introducing new challenges of testing the marriage vows, the already frail marriage of an intersex couple is tested to no limits. Further, the doctor who reveals the intersex diagnosis to a couple has no idea whether it is information which has been shared with the non-intersex spouse? What if there was fraud in a marriage. Now the medical system is just compounding the marital issues and for their patient.

There are several first-hand accounts by intersex patients who have widely rejected the surgery. They either prefer to wait or never have it done. Regardless, they want it to be “their” decision and not the doctor. If a heart surgeon does triple by-pass surgery, they document it as such on medical record. If a neurosurgeon does traumatic brain injury surgery, they document it as such on medical record. Why is intersex surgery NOT documented similarly with facts? Apart from stigma, maybe there is something about the controversial treatment which is medically not acceptable? All we are asking for is the truth.

Even the most compassionate and loving spouse may finally end the marriage. Potentially dealing a devastating effect on the intersex patient. Do the benefits justify the risks of happiness? After all, isn’t the purpose of the medical treatment to give a healthier life for the intersex patient and ultimately happiness?

 

Male Caregiver Feedback For Intersex Diagnosis

June 13, 2012 by survivor

Intersex diagnosis truthIntersex 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 hereNo 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.

Caregiver Appeal

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’?

Third Gender – Equality and Truth

May 29, 2012 by survivor

It is a brave and honest person who can stand apart from the masses and openly challenge its most treasured beliefs. ~ Donna Evans

As humans, we understand a little about our complex bodies even with the greatest medical science. It is what it is. Then why lie? Secrecy and stigma are worse than the condition itself. Without truth and transparency, it is difficult to pass laws, provide equal rights, offer support and help for all. We need to have an environment which encourages truth, tolerance, and respect for all.  Are there only two genders or is there a third gender? Regardless of which side of the issue you are on, we can all agree that truth is always the right option and secrecy and lying have no place for a long-term solution in a civilized society. There are several issues with secrecy and lying. First it is wrong. Second it does not take into account the feelings and trauma of the person being lied to. Third it could lead to criminal acts such as if lying is a crime under oath. What are the bioethics for disclosure to spouses?

It is NOT about gender identity or it is NOT about the sexual identity, it is about the HUMAN identity which is to say the truth.

As a human being, everyone deserves a feeling of “belonging”, understanding and acceptance. Without recognition of the truth, how will an intersex person marry legally or how can an intersex couple (who are infertile) adopt a child legally or have a child through in vitro fertilization (IVF) legally?  What about the equal laws and rights of the young, male, spouse caregiver of the intersex patient? Truth above all is the right long-term solution. If allowing a “third gender” option helps foster saying the truth then maybe that is the path to take. By saying the truth, one can get rights and people are making changes in the third gender community including wanting legalizing sex reassignment surgery (SRS).

The Truth – Some Want The Third Gender and Some Don’t

Gender identity and sex identity are biological, cultural or biocultural? The western culture and laws have a narrative of binary gender – male or female. As a result, several resources and money are utilized to promote science, research, groups, communities, viewpoints only from a binary gender perspective. While for centuries, the existence of “third gender” is widely accepted in South Asian cultures like India, Pakistan, Bangladesh, Nepal and other places like Phillipines, Oman and so on. In Hindu religion, hijras are both recognized and have a special status. Culturally, people have a right to be allowed their freedom of expression as noted by Nepali LGBTI politician and activist. After all, diversity should be tolerated and celebrated. Through centuries, the “third gender” has been institutionalized and also holds a special relevance in the society. The “third gender” are enjoying more civil rights; being counted in the census, right to vote, option to display third gender on passports, and other freedoms. The “third gender” is legitimized in several places in the world. Above all, the “third gender” are free to express the truth as they see it – a fundamental right of any human being.  The western narrative of binary gender could overshadow the cultural diversities and the viewpoints of others in the world who believe in the “third gender” and respect it. With globalization occurring at a faster pace than ever before, it is important to account for everyone’s voice to be heard and be respected and not just the loudest voice in the room. It also so happens the South Asian countries happen to be some of the most populous in the world and statistically would have more “third gender” persons. Has their voice been heard or considered? Non-western cultures have accepted the truth as nature delivers for centuries instead of forcing people to use a strategy of secrecy and lying. In truth, there is respect for all human beings. Shouldn’t we be working towards an environment that fosters saying the truth?

Binary Gender Viewpoint

This is a debate which may never end. The binary gender viewpoint assumes there are only two genders in the world – male or female. Implicitly, are they denying the rights of people on how they should feel? There are several accounts of intersex people who feel neither man or woman or feel both, it just is. Why cannot intersex people feel as they do? Ironically the proponents of intersex communities fall prey to the heteronormativity norm and educate their members that they should “feel” like a woman or a man. They do not introduce the concept of the “third gender” in their education and awareness. Some members of the community just might feel more comfortable identifying themselves as the “third gender” if the option were available. And when the communities do not take up a unified approach, it is hard to change laws and instead succumb to the binary gender norm. Inadvertently, they may be even encouraging a culture of secrecy and lying which could be more devastating than the condition itself. There are instances who want a definition of gender based on biology, how will that help people who do not fall into either category? Are these viewpoints taken into account? The fundamental question is does the binary gender viewpoint encourage an environment of truth, tolerance, and respect for all?

Third Gender – Truth for Inclusivity

The best thing about recognizing the “third gender” is it gives an option for those who would like to opt for saying the truth. As a human being, they do not feel confined to a binary definition of gender. The feeling of freedom of expression is priceless in its own way for every human being. Contrary to popular belief, the binary gender approach is impeding progress in freedom of expression as noted by a famous Nepal activist and politician. Giving the ability to a person to identify themselves freely gives them the chance to say the truth. It offers them freedom from living in secrecy and lying. They can build better, meaningful relationships based on understanding and acceptance. Without recognition of the truth, how will an intersex person marry legally or how can an intersex couple (who are infertile) adopt a child legally or have a child through in vitro fertilization (IVF) legally?  It is about respecting feelings of all including the caregivers of intersex people who may have been lied to. It is important for the caregivers to be allowed to share the truth freely as they see it just like an intersex person is allowed. Or are we going to advocate infringing on caregivers’ minority rights? Are there equal laws and rights of the young, male, spouse caregiver of the intersex patient? In the end, let truth prevail. Education and awareness “inclusive” of feelings and sensitivities of all is the right solution. Imagine a medical condition like Alzheimer’s – a very traumatic condition both for the patient and the family caregiver. 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?

“We often talk about moral values, justice and trust, but the important thing is to put them into effect in our everyday lives.” – Dalai Lama

East or West, Truth is the Best

Here is an excerpt from a recent article:

Male-to-female transgenders, also known as “hijras”, have a long history in South Asia, experts say. The Sanskrit texts of the Kama Sutra, written between 300 and 400 B.C., refers to a “third sex”. The Kama Sutra is an ancient Indian Hindu text on human sexual behavior in Sanskrit literature.

During the Mughal empire in the 16th and 17th centuries, castrated hijras – or eunuchs – were respected and considered close confidants of emperors, often being employed as royal servants and bodyguards. These jobs were so coveted that historians say some parents actually castrated their sons in order to attain favor with the Mughal kings and secure employment for their children. But despite acceptance centuries ago, hijras today live on the fringes of Indian society and face discrimination in jobs and services such as health and education.

“I think things are different today because of the kind of laws that were introduced to India when the British came. The whole concept of unnatural and natural was defined in our law,” said Indian gay rights activist Anjali Gopalan.

*************End Excerpt*************

This treatment stems from the British enacted legislation: ‘The Criminal Tribes Act 1871’ under which hijras were criminalized and persecuted. This is not about the East Vs. West. This is about the truth. Accepting the truth. Understanding the truth. Looking ahead with the truth. If we continue to sow the seeds of secrecy and lying, there maybe no fruit to enjoy.

By being truthful, the “third gender” for centuries were able to get more recognition and have a better life than today. What have they achieved  by secrecy and lying either for themselves or the ones they come in contact with?

Out With the Old…And In With The Truth

Traditionally, the medical approach has been for intersex people to have sex reassignment surgery(SRS) with or without the consent of the patient and an institutional strategy of secrecy and lying is used. Why? Today advocates of intersex people want to move from a traditional “concealment-based approach” to a “patient-centric approach”.  It is the right direction because it involves saying the truth. Have they gone far enough and “included” everyone in the “new solution”? What about including caregivers of intersex people? For example, when the surgery and treatment occurs while in a marriage and what it does to an unwitting young, spousal caregiver? Who is the advocate for the rights and what is in the best interest of the spousal caregiver of intersex people? Given that equal rights of LGBTI are still in the making, equal rights for caregiver of LGBTI are not even being discussed or on the horizon because the truth is silenced. Intersex people can identify with the issues of secrecy, lying, trauma, crisis, stigma, sensitivity, and so on. A caregiver has their own feelings as a patient caregiver of this medical condition. Worse yet if the caregiver was lied to and brought into this situation unknowingly. Having a genetic condition is no one’s control but lying about is in their control. The struggles that intersex people have gone through and are still going through are well documented and are beginning to gain some ground in altering traditional stereotypes. They will be the first ones to recognize then how much of an uphill it is for a caregiver of intersex people to be recognized. Just stick with the facts – the truth. Caregivers have all the sensitivity for intersex patients but sensitivity has to be two ways. Can we show some sensitivity to the silent, isolated, often intimidated, stigmatized, bullied, caregiver of intersex patient? A far smaller minority than the total population of intersex patients.

8 Tips For A Caregiver of Intersex or Androgen Insensitivity Syndrome (AIS) Patient

May 10, 2012 by survivor

Tips for Caregiver of IntersexSomeday we will all live in a world where truth is prevalent and respected. 

Intersex or 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. It is well-documented that the treatment plan for AIS patients is part physical where a sex reassignment surgery(SRS) is needed to remove the male testes and subsequent Hormone Replacement Therapy (HRT). In addition, the treatment plan also calls for psychosocial counseling for severe trauma and crisis issues. There is secrecy and stigma issues which hold back the information from being shared and thus help is scarce. There are some reports available on LGBT caregivers geared towards issues of elder LGBT caregivers and even they cite lack of data and secrecy issues. Little information is available for young, male, spousal caregiver of LGBTI. When the secrecy and stigma are overcome and we can freely discuss Intersex care, an inclusive approach including palliative care for intersex patients and family will be available.

  1. Respect and Dignity – Commit yourself as a caregiver to show respect and dignity for all humans. In the unfortunate event you have been lied to as a caregiver, find support for yourself but continue to show respect and dignity for the patient.
  2. Patience – When someone undergoing SRS and HRT as an Intersex patient behaves badly or becomes unruly or threatens. Never see their behavior as a personal attack. As a caregiver, you must understand that occasionally they have no control over their own emotions.
  3. Love –  Remember when the person was healthy and vibrant, full of life, love and laughter--treat them like you would treat them if they were not undergoing treatment for Intersex. As per a recent study by Fred Hutchison Cancer Research Center, women are 6 times more likely to be divorced or separated when diagnosed with a major illness. You stayed on as a caregiver. There is always hope after the treatment stabilizes, try to look ahead for the good days.
  4. Doctor Visits – If your loved one, the Intersex patient asks you to go with them to the doctor’s visits, make sure you have the prior approval of the doctor. It may be prudent to research the doctors before beginning treatment so that there is no disappointment later on and lack of support issues do not arise. You can help the Intersex patient by learning about different treatment approaches and ensuring the health care provider respects a patient centered approach.
  5. Secrecy – The patient and their ecosystem including medical professionals may demand secrecy. Even though, as a normal human being and as a caregiver you may be in shock, learn to deal with the secrecy and lying. It is part of easing the traumatic condition of the Intersex patient.
  6. Science and Medicine Help – Intersex is a rare medical condition. It is even more rare to have a spouse as a caregiver of an intersex person and very scant data is available. There are no scientific studies or research available on this rarest of rare situation. The secrecy and stigma only compound the problem by people not speaking up. Your experience as a young, male, spousal caregiver of Intersex patient while very rare is real contrary to popular belief now. Be sure to take care of yourself or you may have long term health needs of your own. Like Galileo observed, the earth is not the center of the universe contrary to popular belief at the time. Eventually, science and society will recognize your needs as a caregiver and as a patient because it’s the truth.
  7. Intimacy – It may be difficult to have intimacy with your loved one while undergoing treatment due to the wild  emotions and the physical limitations at times. Work through these issues with patience and understanding while keeping in mind the behavior of the patient is not a personal attack.
  8. Caregiver Respite – The Intersex patient is most important. Everyone involved wants secrecy and by recognizing the caregiver, the ultimate secret may be outed. Will be difficult to get respite unless someone else in the know or in the family steps up.

Imagine a different medical condition like Alzheimer’s. While there is no known cure, the best cure is to rejoice the moments. 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?

Someday we will all live in a world where truth is prevalent and respected. Are we there yet?

Intersex or Androgen Insensitive Syndrome (AIS) and Waiting Period Study

April 26, 2012 by survivor

ais intersex parentIt is not the purpose of this group to advocate or disallow anyone from having children. The intention here is to have a healthy discussion with valid information like establishing a “waiting period” in the best interest of the child and for a healthy relationship of a person with AIS. 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. The idea is to let the facts digest and have an honest discussion to arrive at a logical and sensible conclusion. Too many decades have gone by using a concealment-based approach through secrecy and lying using confusion and fear-mongering tools. It is time to change and time to start addressing real problems instead of concealing. When a person is under severe trauma, crisis and stress, is it appropriate to be a primary care provider for an infant?

It is a fact that intersex or AIS patients cannot have biological children, sad but scientifically true. When they want to have a lovely child, the options are to have someone else’s child. Adoption is a widely utilized approach. There are several guidelines that multiple think tanks and governments have arrived at for adoption including well-being of adoptive parent, the non-biological parent. There are specific laws both at country level and international level which regulate adoption. There is a “homestudy” approach required in an adoption case. If a person needs glasses for corrected vision, the government regulates and makes mention of it on the driver’s license. Similarly, in the best interest of the child and as a public health issue, it is prudent to conduct a scientific study to establish the rules for a non-biological parent to be the primary care provider for the child. Is is NOT prudent to use an “under the radar” approach and making it a sole responsibility of the biological parent – also a caregiver of an AIS patient simultaneously.  The young and inexperienced caregiver needs help and guidance and wisdom of the many.  That is where the society needs to step in and provide a waiting period study. What are the bioethics for the innocent infant and the unknowing caregiver to protect them?

Waiting Period Study

There are several research reports and known medical knowledge that AIS or intersex people may opt to have sex reassignment surgery (SRS). As part of the continuing treatment plan, the AIS patient goes on hormone replacement therapy (HRT). In addition, the treatment also calls for appropriate psychosexual counseling due to the medically diagnosed severe trauma and crisis. To the best of our knowledge, there are NO studies available of evaluating an adult AIS patient undergoing a SRS, HRT and immediately being a primary care provider for an infant. The “waiting period” we are discussing here is this unique situation. In absence of data, what reliable information do we have to base the final decision on? As a caregiver having witnessed this highly unique and unprecedented situation first hand, it is imperative to have a “waiting period study” and save future lives of infants and the other parent. Typically, AIS patients who choose to have surgery is at or around puberty. Or some AIS patients may choose to not have the surgery and subsequent hormone therapy at all. This “waiting period” would not be applicable to them. It is not the suggestion that AIS patients having surgery in adulthood, way after puberty, should not have children. We need to understand when an intersex person who undergoes surgery and hormone treatment have overcome the personal trauma and crisis. The intent here is to have a truthful scientific study so that appropriate options can be evaluated in the best interest of a child.

There are studies which have discussed issues of “Gender-related behaviors, namely childhood play, peer association, career and leisure time preferences in adolescence and adulthood, maternalism, aggression, and sexual orientation”. Would there be similar characteristics in an intersex person under severe trauma and crisis when they initially undergo Hormone Replacement Therapy right after the Sex Reassignment Surgery in adulthood while in a marriage? The reasons maybe different but the resulting symptoms are similar. Symptoms of HRT include depression, irritability, fatigue, mood swings, hot sweats in addition to the trauma and crisis identified due to the intersex condition. Is this a condicive environment to be raising an infant with love, care, patience? The severe trauma and crisis may have symptoms akin to Post Traumatic Stress Disorder (PTSD). Is there any study on this area?  Unfortunately, due to NO studies available in this unknown area, there are no valid guidelines either and much like the intersex condition is treated with secrecy. As humans, we all want to do the right thing and give a child to an infertile person but let’s not do it at the cost of the infant and their biological parent – the caregiver. Let us make sure that the infant and the caregiver biological parent of the infant are equally protected. The BIG difference being there is an innocent infant and an unknowing caregiver involved now. What about the innocent infant’s best interest and the other parent – the caregiver’s best interest? It will also assist the intersex person in having a healthy relationship with the partner.

The sad commentary here is that because of the traditional concealment based approach and the secrecy and lies it utilizes, it is difficult to get a true, unbiased, scientific study and credibility is at stake. The so-called subject matter experts may be more about saving their reputation and special interest groups may be more about establishing their agenda and unfortunately, the “best interest of the child” may be lost or secondary. Today there are no special safety or health guidelines for the primary caregiver of AIS. There is no proper crisis or trauma management given to caregivers of AIS. Is it fair to ask them to be solely responsible for having a biological child and offer no help to them? Is it fair to the innocent child? In our zeal to recognize intersex or AIS patients as female who are infertile, are we forgetting the innocent infants and caregivers? Is there a violation of the human rights of innocent infants and caregivers in order to “right” a genetic condition.

Looking Ahead for Intersex Waiting Period Study

While today the world is still knee deep in controversial issues like fair and equal rights of LGBTI, we are discussing a world after that. We are looking into the future when LGBTI rights are equal. Then intersex people will no longer have to live a life of secrecy and lies. At that point, how best do we get “normalcy” in everyone’s life. Not just the intersex person, but also their caregiver, their children, and the entire ecosystem. Today, we are still in a world where bringing up LGBTI is a polarizing issue. Today, we are still in a world when mentioning LGBTI in any way brings intimidation and bias. Once we move past that, we can have an honest and logical discussion about a “waiting period study” for intersex or AIS patients when they have SRS and go on HRT in adulthood and immediately have to care for an infant. Truth always prevails and is the right long term solution. By having an inclusive approach, we will make a better world for ourselves and our future generations to come.

Should there be a waiting period established for the treatment to stabilize before caring for the child?

EventMajority WomenIntersex patient surgery during marriage
Puberty Starts and Estrogen Hormones OnsetsAt age 12 (natural)At age 27 (With Aid of HRT)
Has a new born infant and be a primary care provider forAt age 13At age 28
Conventional Wisdom on being a Primary Care Provider in this condition?What do you think?What do you think?
Has a new born infant after almost a decade on hormones At age 21At age 36
Conventional Wisdom on being a different parent in this condition?What do you think?What do you think?

Young, Male, Spouse Caregiver – A minority within a minority

April 23, 2012 by survivor

young-male-spousal-caregiverA recent survey by the Family Caregiver Alliance, there are 65.7 million family caregivers in the USA and found that 34% of all caregivers are Males.

It also found that young caregivers comprise less than 4% of all caregivers, and less than 13% are spousal caregivers.

This survey for the first time gives us a remarkable insight into the previously hidden world of caregivers, and contrary to the well established and pervasive stereotype of the elderly female caregiver, we find within the data the existence of a rarely recognised and seldomly supported minority caregiving group, the young to middle-aged, male, spousal caregiver, a minority within a minority.

Minority Caregiver

The condition is very traumatic for the patient. What kind of support, resources, rights are available to this minority male caregiver category?

Anyone who cares for someone, regardless of their gender, has a compassionate and selfless view of the world. They deserve respect, support and laws to protect them equally regardless of gender. Consider some of the issues that a young, male, spousal caregiver may be faced with.

  • The caregiver is a male – a minority. As per a recent survey, 34% of all caregivers are men.
  • The caregiver is young in their 20s or 30s, far younger than the average age of 49 for a caregiver.
  • Less than 13% of all caregivers are spousal caregivers. They are themselves at high risk of becoming a patient themselves.
  • Young, spousal caregivers are also at imminent risk of losing the emotional support and intimacy of their spouse, depending on the patient’s medical condition.
  • Spouses do not have access to information of their loved one, whose information is hidden due to privacy provision.
  • Because of a lack of information or privacy, resources and support are unavailable for the young, male, spousal caregivers.
  • The young, male, spousal caregiver’s life, career and future plans are at a standstill at a very young age.
  • What if due to a traumatic medical condition there is domestic violence or abuse against the young, male, spousal caregiver? There is very little protection for the male carer in this situation under law.
  • The young, male, spousal caregiver has to fight the entrenched stereotypes and the related bias against them, found in every institution that otherwise is there to help caregivers.
  • Caregiving Isolation – there is very little support and people who understand a young, male, spouse caregiver in his peer group during caregiving. And once caregiving has ended, there is still very little support and people who understand as the caregiving has changed him forever.

There are several other socio-economic, psychological, and other issues that arise out of this one event in their life. The young, male, spousal caregivers range from being caregivers of cancer patients to several other medical conditions. In many cases, the carers relationship with his loved one, the patient, is relatively short and not yet fully developed. As per a recent study by Fred Hutchison Cancer Research Center, women are 6 times more likely to be divorced or separated when diagnosed with a major illness. The carer could have left early in the relationship, however the young, male, spousal caregiver stays in an unpaying caregiver position out of selfless love. A commendable but very rare trait in this world.

Broken Trust Of A Caregiver

Now imagine if the young, male, spouse has also been deceived as to the existing condition of his spouse. Imagine if the spouse had a rare medical condition which was hidden in the sanctity of marriage. Now the young, male, spousal caregiver becomes a miniscule minority within a minority. 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 AIS  or intersex patients are a rare but very committed group of people. Given the secrecy and deceit surrounding intersex, the young, male, spousal caregivers of an intersex patient may have been unwitting victims of a relationship based on half-truths or untruths.

Trust is paramount in a marriage and what does one do when trust is broken? Among the intersex community, there is a widespread discussion on foregoing the traditional concealment-based approach (aka deceit and secrecy). Because of this secrecy, the male, spousal caregiver does not get the information about the medical condition because of privacy prohibitions. How is he supposed to cope alone without proper access to information. Moreover, given the stigma associated with the medical condition, the caregiver has to debate between saying the truth or respecting the patient’s privacy. How is he supposed to get support or help from support groups, caregiver resources unless he is allowed to say the truth. In a way, it is like fighting the same social taboos all over again like in HIV/AIDS and the fight is still continuing.

As with other rare medical conditions, to the layman, they have possibly no information about the condition and may have never even heard of AIS or intersex before. While the condition may be traumatic for the patient, what about the caregiver who has little information about the condition, and even less support?

Caregiver of Intersex or AIS Patients

The impoperly-informed caregivers of AIS patients, itself a rare condition, are an even smaller subset of a minority, but are no less deserving of support and compassion themselves.  It is hard to find any similar caregiver category, which combines the pressures of youth and caregiving, with the unfortunate elements of deceit and stigma. Does this however mean that young, male caregiver should not get support? The answer should be No, however the reality is very different. It seems like it is a crime to become a young, male caregiver due to the severe lack of awareness and support. Let us defeat the secrecy and stigma with truth and education.

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

  • The unwitting caregiver entered a relationship based on deceit, only to later find out about the reality of their AIS partner.
  • The AIS patient has plenty of support and resources, however due to privacy provisions, the caregiver is often left in the dark.
  • The unwitting caregiver’s feelings and abuse are never recognised, let alone addressed.

Let us start by providing the needed support to the young, male caregiver one thing at a time.

The situation is so unique that there are no support groupsno NGOsno medical intervention groupsno lawsno ‘institutional look the other way doers’ to help young, male, spousal caregivers of AIS and protect their rights. While the world is still struggling with equal rights for LGBTI, rights of caregiver of LGBTI are not even on the horizon yet. What about equal human rights?

When one factors in the “stereotypes” where males are considered to be LESS of a caregiver, these specific group of caregivers have an added burden of fighting through the bias and discrimination. There is no one to marshall the resources and work the system to help the caregivers who have undergone this severe trauma in loneliness at a very young age.

Imagine a different 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?

This post originally appeared on Ezine4Males Articles on 11th Apr. 2012.  This is cross-posted from there.

Caregiver of Alzheimer and Androgen Insensitivity Syndrome (AIS) or Intersex

April 17, 2012 by survivor

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. Frankly due to the severe lack of resources for caregivers of AIS or intersex patients and given the secrecy and lying around intersex, I tend to find lot of useful resources for caregivers by learning from other caregivers. One of the group of caregivers I have found a lot of useful information from is Alzheimer caregivers. As a debt of gratitude to everyone associated with Alzheimers – patients, caregivers, doctors, nurses, science and so many others, it is a great job you have done in educating others. We may not have answers but raising the awareness provides a ray of hope getting closer to the answer. Change always starts with something new and something small. I pray and hope that the intersex community also takes an inclusive approach between patients, caregivers, family members, doctors, nurses, and the entire ecosystem.

Young, male, spousal caregivers of intersex patients are a minority within a minority. There are so many similarities and dissimilarities between caregivers of Alzheimer and AIS or intersex. Especially, when so much information is available on Alzheimer. Apologies in advance if there is a misunderstanding of Alzheimer’s as the experience is strictly from learning from other Alzheimer resources and caregivers.

Some Similarities for Caregivers of Alzheimer and AIS or Intersex:

Alzheimer
AIS
Both conditions affects the entire family. Alzheimer is a traumatic condition for the patient and for the caregiver. As much as it is a physical medical condition, it is also a mental health and emotional condition like AIS. The patient caregiver is often referred to as a "second patient" of the condition.
Conflicting emotions of love and Caregivers Guilt are often cited by caregivers. Patients with either of the condition require regular care — a responsibility that generally falls to a family member. The caregiver - be it a spouse, sibling, child, friend, or a loved one has a deep bond for the loved one, the patient.
The change in personality, cognitive skills, emotional well-being and violent behavior in rare cases is common between patients. It is a state of emotional comatose. While the changes are explainable medically in either patients of Alzheimer and AIS, the medical condition makes a huge impact on the caregiver. Up until the treatment starts, there is a great emotional connect between the patient and the caregiver. With the advancement of the condition/treatment, the caregiver has possibly lost their emotional partner. Is the caregiver living through the medical condition through the loved one, the patient?
Through sickness and in health.  In the early years of caregivers for Alzheimer's, there were hardly any support groups with a common aim. There was no "release channel" for the caregiver to just let it out with a fellow caregiver. Just to have a shoulder to cry on and get recharged again to care for the loved one. It is through some great advocacy and predecessors that today we have Caregiver Bill of Rights. Intersex caregivers lack support. Both caregivers stay to keep their vow to the loved one through great sacrifices.
Very little information and resources available for caregivers. In the early years of Alzheimer's, the caregivers were provided with little information and there was no "manual for dummies" for caregivers. It was a forced, circumstantial situation and as a caregiver you either accepted the loved one or did not. For young, male, spousal caregivers of AIS and given the sensitivity of the condition; the spouse, a non-blood family member does not enjoy the same access to health care information due to privacy.
Conflict within the family as to who would be the caregiver. If long-distances are involved within the family, the caregiving responsibility falls solely on a single caregiver who is closest with the patient, typically a spouse.
For the caregiver, taking care of the loved one is a full-time event including dealing with their own life. For others including members of the family, it is a "sad" event for a loved one and are very removed from what it takes to be a caregiver on a day-to-day basis.
As a caregiver, their life comes to a stand-still. You are responsible for household chores, paying the bills on time, finances, social calendars, and so on. Caregivers often put their careers on hold or pick careers offering more flexibility to take care of a loved one.
Intimacy. While not a deeply discussed topic, it is important. For the spousal caregiver, the loss of loving touches, loss of emotions from their loved one is devastating and any sexual desires are put on hold while the patient, the loved one recovers. The patient's behavior is due to the medical condition but the spousal caregiver also needs emotional and moral intimacy.

Some Dissimilarities for Caregivers of Alzheimer and AIS or Intersex:

Alzheimer
AIS
One in eight older Americans has Alzheimer's. One in 20000 births has AIS. Consequently, the number of caregivers for Alzheimers is far greater than caregivers of AIS. Scant to no resources, support groups, advocacy for caregivers of AIS are available They are reinventing the wheel that some great predecessors have already fought for.
For spousal caregivers of AIS, chances are high that they were lied to and betrayed given the Intersex protocol of brainwashing, propoganda, and falsifying medical records. In addition to all other issues of a patient caregiver, he also has to deal with betrayal and distrust Vs. sensitivity. It is a tall order at such a young age and at beginning of a relationship.
There is little known information on specific causes of Alzheimer's but there is a widespread awareness which helps funds for research and hope for a cure. The typical age of an Alzheimer patient is much older. In the meantime, plenty of support and training is available for caregivers who are the best defense for fighting against the condition. More than 15 million Americans provide unpaid care for Alzhiemer patients. In contrast, AIS is a well-understood condition medically and typically is diagnosed pre-puberty or at or around puberty. No one can predict if the spouse you marry may get Alzheimer's down the road. But AIS patients can choose to share with the spouse up-front about their genetic condition especially in the sanctity of a marriage. Very little or no support is available for the unpaid young, male, spousal caregivers of AIS.
Alzheimer patients have visible physical symptoms and have mental health issues. AIS patients have few visible symptoms and have mental health issues dealing with the severe trauma and crisis. The "state of mind" is a complex situation to understand and solve. In the social context, it is easier for people to see a visible symptom and offer care but miss out on the "big" mental health issue.
Alzheimer patients, at a much older age, are not necessarily the primary care providers of infants or children. AIS patients could be primary care providers for infants immediately following treatment. There is NO data on this situation, it is unprecedented. Can a person under severe stress and trauma undergoing intersex surgery treatment be a primary care provider for an infant or a child? What does this do to the entire patient-caregiver dynamic? There are plenty of experiences where a caregiver with children is also caring for a dear parent or sibling or loved one with Alzheimer's. But being a caregiver for your spouse with Alzheimer and a primary care provider for your infant at the same time is rare.
Given the typical age of Alzheimer patients, there may be other age related issues. The symptoms are physical and easier to identify. Sadly, these are medical issues closer to end of life and the social context is much different towards a Alzheimer patient. In an AIS patient who has treatment as an adult while in a marriage, a huge remainder of life remains after the treatment stabilizes. The symptoms are more psychosexual issues and hard to pin down unless people around the patient know the truth. The social context is very different towards a young, AIS patient who has been through severe trauma and crisis. What about the caregivers? Did they live the condition through their loved one's trauma and crisis?
For AIS caregivers, if the caregiver is a spouse, the caregiver would be in the category of a young, male, spousal caregiver - a minority within a minority. The length of the relationship between spouses is too small. Is there an equivalent bond of love and deep commitment? The caregiver's peer group is young and hard to find a "fellow empathizer" as opposed to several caregivers of Alzheimer. The support system for young, male, spousal caregivers of AIS is non-existent at best.

 

Inclusive Approach For Caregivers Of Androgen Insensitivity Syndrome (AIS)

March 29, 2012 by survivor

no more shhhh for caregiverWhen AIS(Androgen Insensitivity Syndrome) was first discovered last century, the modus operandi has been to provide a concealment-based approach including secrecy and lying. Maybe it made sense then but as with everything else, circumstances change. It is important to recognize the circumstances of today. With openness and awareness increasing, it is better to be truthful about the facts with everyone’s sensitivity in mind including the unknowing caregivers. AIS is no longer a subject privy to medical professionals and a closely guarded secret of the medical community and its patients. It is time to change with the times. An inclusive approach is a better long-term solution for the entire AIS ecosystem.

Caregivers Perspective

There is a lot of discussion around addressing the needs of an AIS patients. There is hardly any support groups focused on the needs of the caregivers of AIS patients. As a society, as we become more informed about various issues, it is important to share the information and not withhold it from unsuspecting caregivers. The unsuspecting caregivers are equal humans and have their own individual needs which need to be addressed as well. In the long-term, being truthful with sensitivity to all is the best approach. Trampling over one person’s feelings to satiate the other is not right, nor “sensitive”.  We cannot judge how big or small anyone’s issue is, that’s a personal call. However, we should attempt to share all the information available to us and discuss with maturity about everyone’s feelings on the information.

Institutional lying sends a very wrong message.

  • First, the evidence gets tainted.
  • Second, the patient learns to lie and has to deal with the resulting consequences. To hide one lie, a thousand lies have to be said.
  • Third, it seriously jeopardizes any ‘normal relationship’ the patient may have. Regardless of the medical issue, any relationship is based on trust. And when a relationship is based on lies, it is kind of being setup to fail and more sorrow follows which becomes a vicious circle for the patients.
  • Fourth, it causes severe trauma and pain for the unknowing caregiver. It is in the medical community’s best interest to safeguard their patient’s ecosystem and the primary caregiver is definitely part of that ecosystem.
  • Fifth, what are we teaching the future generation, our kids? Is it OK to lie in some cases even if it victimizes someone else?
  • Lastly, the concealment-based approach will not stand the test of time. Truth and honest discussion will stand test of all times, always.

Some Reasons Why It Is Time For A Change

1) Is it fair and equitable to all concerned, especially the unknowing partners turned caregivers of AIS patients?
2) Are we creating a new group of victims?
3) Are we breaking any prevailing laws?
4) Does it really help the AIS patients and their ecosystem?
5) What type of role models are we to our future generation, our kids?
6) Who is it we are really trying to help?

What Is The True Cost Of Lying for Caregivers?

March 4, 2012 by survivor

Lying is a risky business. When lies occur between people, there maybe break-ups and you simply let go. When the same lies occur in a community environment, it is looked as fraud, possibly even a crime and legal action ensues. When the same lies occur in court, its perjury and it is up to the relevant authorities to see if the system is being manipulated and disrespected or not? Secrecy and lying by AIS (Androgen Insensitivity Syndrome) patients and by institutions and authorities on their behalf is wrong and insensitive. Is it same or worse as other scandals like Arnold Schwarzenegger or Tiger Woods or John Edwards, all who had very supportive spouses for years and took care of the kids. Unknowing caregivers at a very young age are victims of this insensitive practice.

From a moral perspective, between humans, what is the true cost of one lie? From a perspective of teaching your own kids, what is the cost of teaching a kid to lie for a lifetime?

Experiencing continuous lying first-hand as an unknowing caregiver at first was reprehensible and then later was numbing. As the old adage goes, when you lie once, do you say 10 more lies to hide one lie? or a 100 lies? or a 1000 lies? I suppose it never ends. After a while, not only it becomes a habit and a part of your fabric in everyday life but it becomes a necessity. From a kids perspective, it becomes confusing about what message they should take? Should they lie or not? Or if they lie, should they lie 10 more times or 100 or 1000? That is a cost we cannot calculate as you are teaching kids to lie for a lifetime.

Whenever you lie, someone else is getting hurt somehow. Or is it more sensitive to lie for someone else even if it hurts you? Something that an unknowing caregiver is forced to do. What is the cost of suffocating someone’s voice? What is the cost of a human voice’s freedom? We all saw the Arab spring recently, millions of people in several countries want their human voices heard. Sadly, some people had to pay with their lives just so that their or someone else’s human voice is heard. They left behind loved ones who still grieve for them. What is the cost of that intuitive human spirit to have their voice heard?

Is making someone lie forcibly on your behalf same as suppression of the voice? Is it oppression? As we move to a more open society, sharing every minute detail about ourselves and with information accessible easily, it would no longer be prudent to lie. What took Erin Brockovich years of diligent hard work to unearth the facts may take less time now. Not because we have gotten smarter but information has become easier to find. In this age, it is no longer “sensitive” for the medical community to lie just because they have been since the last century. It is time for them to change with the changing times. The tools available today are too smart for people to lie to each other, especially at an institutional or systemic level.

The contention is that this medical malpractice is actually spreading a different epidemic with this behavior instead of trying to solve the real problem. They may be arming their patients with a prescription to lie since authorities and so-called subject matter experts like them support them at an institutional level. The right solution is the truth. Truth to the patients, truth to the caregivers, truth to others via education and awareness. Because when they teach their patients to lie its like a parent teaching their kids to lie, it’s a very confusing message. Smoking cigarettes inside buildings was allowed before and it was cool. Smoking is no longer allowed in most buildings in the world. Times change and it is time for a change to stop lying in the medical community. Frankly, the medical community is too biased to even calculate the cost of their lying prescription. They would rather continue this malpractice and spend more time in offering some cock-eyed, scientific, logical explanation to justify their behavior and satiate their soul. We pray we are wrong. And saying it’s for “sensitivity” reasons is wrong. Because when you lie, you are hurting someone else and that is insensitive. Unless, the discussion is that one human’s life is lesser than other’s?

We may never know the true cost of a lie or a thousand lies but one thing will always stand the test of time, it’s the truth.

Caregivers Healing Plan

March 4, 2012 by survivor

As caregivers, we all need a plan for us to go on. Caregivers Support Groups are fantastic and do a lot towards achieving this common goal of healing. It is even more beneficial that there are specific caregivers support groups by different ailments which specifically address issues unique to that group. In a sense, it gives a sense of belonging, a family, to the caregivers who are otherwise going about their routine because of their good-natured heart. Because of this good-natured heart, caregivers often put themselves last and always put their loved ones ahead of themselves. The Caregiver Healing Plan is about life with caregiving and life after caregiving.  Life must go on and let us make sure inadvertently we do not make caregivers into “new” patients.

In order to begin the healing either while caregiving or after caregiving, it is first important to recognize the facts. Take a self-assessment stress test to see if you are experiencing any of these issues. While this is not a medical recommendation of any sort, it will give you an idea whether to seek professional help.

A few years ago and still today in lot of families, it is taboo to discuss living wills. But ask any financial advisor and they will tell you that it is prudent to have a living will to make lives smoother in case of the unforeseen. The message is to plan ahead and plan for the future. Similarly, it is important for every caregiver to have a Caregiver Healing Plan. All caregiver support groups should provide a specialized Caregiver Healing Plan specific to their cause to all their caregivers. For example, caregivers of Alzheimer’s where a patient passes away or a cancer patient passes away may have different needs than a patient with rare diseases who survives.  It is important to keep the caregiver in mind when thinking about the Caregiver Healing Plan. There are plenty of intelligent minds already working on a healing plan for the patient. The caregiver cares about the patient, a loved one, and they want a plan that satisfies both.

There are plenty of good suggestions/articles on Caregiver Bill of Rights. I will not take up space here to re-iterate the same points and state that readers of this article are understood to be familiar with Caregiver Bill of Rights. The Caregiver Healing Plan is intensely focused on healing of the caregiver and needs of the caregiver. It is with this intention in mind, that the following suggestions are made for the Caregiver Healing Plan.

Caregiver Healing Plan

1. Get a “punching bag”. Let it out.

Whether it’s a real punching bag or a bag of chips or listening to music or creating music or a notebook to write your thoughts or sharing with support groups, family and close friends. The idea is to let it out. The healing process does not “start” or “stop” – it is always ongoing. Sometimes a distant memory several years later may trigger something in you as a caregiver and wish things could be different – the healing process will help you then also. Learn to let it out. The good-natured energy that is in every caregiver needs to be shared. So let it out.

2. Exercise. 

There is a huge connection between the mind and the body. I am no doctor and the only proof I have to offer is I have experienced it. Anyone who has experienced the joy and rewards of exercise and the mind and body working in tandem can attest to this. Exercise per your physician’s recommendations. Running, walking, cardiac activities are great if your body allows it. If the body is unable, doing simple stretches or even exercising the toes or fingers would be great. It is not about the quantity, it is about getting into the routine. Make sure you change into your “exercise clothes”, schedule the activity, and eat healthy. If you have an activity planned, your mind will be very focused.

3. Paperwork and Self-Care.

As caregivers, we are constantly inundated with paperwork and organizing it. We also have to study up on new topics which sometimes are like Greek and Latin. Most caregivers are very well-organized. But caregivers forget to organize their own paperwork. When was the last time you scheduled an eye appointment for yourself? Or had a blood pressure check-up? Or went to a skin specialist? Or went for a foot massage? The list can go on. The point is do not forget about thy self, please do something about it. Take care of yourself and make list of things you need to address as a patient. And schedule them. Do not put them off.

4. Sharing and Self-Heal.

For every caregiver situation, it is unique and different. As I like to say it, for every person, their issue is like their Mt. Everest. So every issue is equally BIG. As we learn to share, be careful whom you share with. As caregivers, if you have a few bad experiences about sharing initially, look up other resources and places for better sharing experiences. The point is by sharing you are helping healing yourself as a caregiver and others as well by sharing your unique perspective. Do not let anyone tell you that your issue is not as BIG. As a “good-natured” person, caregivers often take the calmer road from point A to point B. And we may lose the opportunity to share. We may lose the opportunity to self-heal and/or help others.

5. Finances.

As with any major event in life, caregiving can have a huge impact on finances. Depending on various circumstances, whether the patient was the primary earner or the caregiver is the primary earner or the family is dipping into savings, financial situation can change heavily. Start planning ahead. Think about the financial situation now and when/if caregiving ends. Life has to go on and life needs money. It is part of the healing process.

6. Life After Caregiving.

I do not like using this word because it gives a connotation of caregiving as a job. Caregivers who care for their loved ones do not look at it as a job. But it is important to get the message across.  Just like we plan ahead for retirement in terms of finances, activities, and life. As caregivers, we need to plan ahead for life after caregiving of a loved one. It is part of the ongoing healing process. If a loved one is no longer part of your life for whom you cared for with all your heart, it is very difficult to let go. There maybe a feeling of loneliness, there maybe a feeling of being lost, there maybe a feeling of relief, there maybe a feeling of what now? Here is where “goal-setting” can help. As a caregiver, note your goals down ahead of time. So when the time comes, you are already a bit ahead.

7. Continue To Give Care.

Caregiving is in your blood. Helping others is what makes you happy. Do not walk away from that. Own it. Champion it. Continue caregiving as a lifestyle. There are various options and several wonderful caregivers are successfully continuing to help others. You will find true satisfaction. Make it part of your Caregiver Healing Plan and the ongoing healing process. It will subliminally help you heal by taking your mind of the past.

8. Faith. The Power Is In You.

Faith often plays a HUGE role in a caregivers’ life. It will also play a HUGE role in the ongoing healing process. As caregivers, we believe in doing good unto others. And surrounding yourself among people will help your healing process. Their faith in you will boost you and as a human, we all need tender loving care. The power is in you to decide what you want going forward.

I hope this helps you. If nothing else, I hope it triggers some thoughts that can help you organize your own healing plan. It is important to heal and it is an ongoing process. Every input we gather can help us in one small way and sometimes that’s all it takes. Heal. Live.