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? Secrecy and stigma make it worse than the intersex condition itself. It serves as a reminder of how HIV/AIDS people had to initially fight the taboo and still do just to present their concerns. Let history not repeat itself.
Secrecy, lying, deceit are a double whammy. First it does not reveal the truth and second one has to undo the damage that secrecy or lying caused. It becomes difficult to calculate the cost of lying especially when playing with emotions.
It’s a very simple goal : Health Care Providers need to change the messaging to caregivers from “It’s not your business to be here between me and my patient” to “I am sorry, even though your loved one, the patient, has requested for your presence as a caregiver, I respectfully decline and I suggest you [...]
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To Whom It May Concern
I support the objectives of the Caregivers of intersex or AIS Support Group:
1. Inclusive palliative care approach for patient and family including caregivers and children.
2. Education and spreading awareness is a better long-term solution for all. The concealment-based approach has to stop.
3. In the best interest of the child, conduct a scientific study to evaluate if a "waiting period" should be established to be the primary care provider for infants immediately after adult AIS or Intersex patients :
a) have sex reassignment surgery.
b) have just started treatment with Hormone Replacement Therapy (HRT).
c) and are overcoming severe personal trauma and crisis.
4. All caregivers should be assigned an independent advocate/counselor to explain the condition and its effects to prevent them from becoming a patient.
5. Caregiver feedback should be sought in devising the hormone replacement therapy and associated behavioral symptoms of the AIS patient involving severe trauma, depression, and crisis.
6. Seek medical data or scientific basis to do sex reassignment surgery and hormone replacement therapy during a marriage when the intersex patient is already in their 20s or 30s.