Can you imagine the difficulty in trying to express a specific pain you had 15 years ago?

Would you wonder what you have forgotten, would you have endless arguments with yourself that somehow, in some way, you just remember things wrong?

Mid-2005 I was involved in founding a HS nonprofit which was a partnership between medical professionals and people with a not so rare disease.

We physically founded this nonprofit in the United States at a time when a nonprofit for the same not so rare disease already existed, founded by and for people with HS.

Can you imagine the animosity, and yes hate and anger directed towards us patient founders of a medical foundation. I will never forget that.

This history, suddenly for me in 2016, became the very definition of irony laced with karma..

For, in 2016, when I found not so rare disease medical foundations, patient nonprofits and even a global patient nonprofit had all made close partnerships with the pharmaceutical industry.

Partnerships so close many people globally have become confused where doctors end, where patients begin, and where pharma company responsibility lies.

A world where the hen was in the fox den and people with not so rare disease like me had somehow, in some way may have become the enemy of this tripartite collusion.

I doubt there are more than six people in this world who may understand specifically how I have felt for the past four years.

The more I tried to be open, the harder I tried to work in unison with others, well, the horrendous behaviour towards me personally increased exponentially.

This is #HidradenitisSuppurativa #Dystopia. It may seem normal.

Trust me, it may be on the far side of what humans perceive as normal.

I have some questions.

Who is your f*cking enemy now?

Who do you support?

Who do you advocate for?

What are you researching?

Why are you researching?

Why are you not working together?

This thread may dissolve and reconstitute itself into infinity.