When 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?
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