I need to acknowledge those who seldom are showered with accolades and for who sacrifice the most. My very special thanks and gratitude to our global community of patients of course, but specifically I would like to take this moment of reflection to say this to our “Facebook Community Group Leaders” and collective leadership within these groups that are known as your “ADMINS”.
THANK YOU FOR YOUR REAL SACRIFICE.
-I know personally what the very real cost to your personal life looks like. It can and is traumatizing at times.
THANK YOU FOR YOUR LEADERSHIP.
-Choosing to devote your life to fill a void and dire need to literally save lives.
THANK YOU FOR YOUR STRUGGLE.
-The hardest responsibility anyone will ever choose to endure and put themselves through.
THANK YOU FOR YOUR HURTING.
-Here to serve others regardless of your own needs as a patient.
THANK YOU FOR YOUR FIGHTING.
-All of the above, it is nothing but the fight of one’s life.
From my heart, to you all. I won’t name names specifically in this public space, but everyone without exception. The large groups and their admins, the same groups who embraced me in my first days and sacrificed for me personally at the time, thank you. The smaller groups and everyone’s special projects and smaller pockets, thank you. My dear friends globally in Croatia, Germany, Israel, Canada, the UK and beyond, thank you.
It is rare to see any community leaders have a moment where the people they live and die for take a second to not just says thanks or send accolades, but to often than not the opposite is the day to day for them having to maintain the peace and provide for as much structure and support admit chaos as possible.
When you put a few thousands of us together, and given the state of affairs history has afforded to us as a “patient group” of those suffering, there is something that happens in my opinion that is unique to HS.
In my call to awareness letter I describe it like this:
“These online communities I speak of and found – observing them for even a very short period of time will expose one to the full range of human emotional experience. It is both beautiful and terrifying. Exposure to random acts of kindness and humility I have experienced, never in my lifetime until recently, have changed me forever. Equally as profound, bearing witness to a choir of thousands of patients in horrific pain sounding off together in cyclical suffering on a daily basis, has given me me my inescapable purpose and the good work of my life.” -source
Maybe it is a phenomenon? I think it is something that will be discussed in the future as a distant memory as gains in awareness and research continue to accelerate. When we begin to realize our place in appropriate medical science and patient healthcare standard afforded as it should be now or in the past but has not.
Thank you guys for all you do and have done. Thank you for helping me personally get through some of the darkest days of my life. I look forward to not just 2016, but the coming years as things are and will be changing for us from what the past has provided.
Ronald James Bercume Jr.
20 Years living with Hidradenitis suppurativa
Rare Disease & Civil Rights Activist
Tags: Facebook Facebook Support Group