Loneliness is the worst disease, secrecy is worse than that.
Imagine there has been a nuclear holocaust and you are the last survivor for as far as your eyes can see. Are you happy to be alive and that you survived? There is every possibility that you are not ALONE and there are other survivors too, maybe in the neighbor city, or state, or country, or continent. You DON’T KNOW. Roads are gone, infrastructure is gone, no food, no water, your natural survival instincts kick in, and as a social animal, a human being, you start looking for other survivors like you. You start walking but cautiously as there is contaminated food and water around but are afraid of exhaustion and so take every step measuredly. Maybe you shout for help hoping someone listens, maybe you cry. Are you happy you survived? Is loneliness settling in? And the worst part is you have no one to share with…to keep you chugging. What is worse – the loneliness or the fact no one around to share with or the fact that you survived? Every human life is dear and worth celebrating, so what makes it worse?
The Deafening Silence
For a family caregiver, it is not exactly a nuclear holocaust but the secrecy and lying creates situations where its a vicious circle of no hope. Every family caregiver needs help and support, we are NOT superheroes. One can only get help and support if they are allowed to share with someone. If they are allowed to reach out to someone. No one needs to walk around with help written on their forehead but should have access to an environment where they can share with a family member or close friend or a professional or someone. When the patient DEMANDS secrecy and lies, how is that helping anyone? If the medical community continues to perform unnecessary surgeries and then lie about it, how is that helping? If these intersex surgeries are considered as torture for patients, is it torture for a family caregiver living in forced silence and secrecy? Is the loneliness and secrecy a double whammy of torture?
If paid caregivers have protection under law, why is there no EQUAL protection under law as a family caregiver? Somehow, there is a disincentive to show love and compassion. Is that the message we want to teach our children? Is there anything wrong with this picture? While morals and ethics CANNOT be regulated, can prevailing laws be enforced? Or is that too much to ask?
As a human being, we all have the RIGHT to feel the way we want. Or is that also regulated? As a family caregiver of intersex, it is very lonely. The secrecy creates a whole another set of issues as one cannot get the help and support they need as a caregiver. And its a vicious circle. Because of the secrecy and loneliness, it is very hard to find others like you. As a result, there is very little hope of gathering a “critical mass” big enough to have the concerns addressed. Imagine a group of caregivers for breast cancer or leukemia or Alzheimer or one of several other traumatic conditions and think about all the support groups, resources, help and support they get. And think about similar groups maybe 10 or 20 or 30 years ago? They were practically non-existent but through advocacy and truth, they have made long strides today. The term, “caregiver” itself is a relatively new term although mothers have been caregivers since humanity existed. The point is without having the freedom to express and share the truth with others, one cannot organize a group big enough to be heard. And by DROWNING the voice of a caregiver, one does NOT WIN but instead perpetuates the abuse of silence and secrecy.
Break the shackles to secrecy and loneliness. Be honest, be truthful and find the help and support you deserve and need. Its a birthright of every caregiver.