Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.~ Harvey Fierstein
I think this quote is supposed to be motivational. Something about not letting others choose your destiny. About making your life about you. I’m not sure if Mr. Fierstein would approve of my selection for this piece, but if you put things in the public eye, you have to expect that it may be used differently than intended.
For me, this quote is another way of stating my currently rallying cry. I am a person, not a policy. Now I have been diagnosed with a rare disease, that cry becomes even more important. I have no desire to become a victim of my disease. In order to prevent that, I must now convince the powers that be that my life is worth saving.
It’s hard when doctors and “professionals” have so much control over my life. I know for a fact that none of them have taken even one step in my shoes. When the numbers say that 1 in 50,000 people across the globe have the same disease as I do, the odds that even one of my doctors has experience with what is now my life is miniscule. Throw in a few other more common ailments and the “professionals” really have no idea.
I don’t fault them for not possessing the knowledge to care for me. I do begrudge them their smug righteousness that they know what is best for me. Their desire to “do what’s best” for me without regard for how I feel is beyond aggravating. I greatly dislike the imposition of their morals on my life. All because they went to medical school.
Right now, I’m having difficulty with the way personal beliefs are infused in medical care. No, I don’t want a robot who only follows the rules. I want a compassionate person who respects my beliefs while providing my medical care. Who understands that I am the one who will live with decisions. While they may experience fleeting feelings such as success or failure, I must get up each day with the knowledge that a decision helped or hurt me. I want a doctor who recognizes that their job is to provide me with information and options and then accept my decision.
I know that’s too much to ask for. Government is so embedded in healthcare that we no longer have a say in our treatment. What pieces government hasn’t touched, morality has. Between the two, finding an individual who isn’t influenced by either is a lost cause. My decisions are no longer relevant nor considered. I’m a layperson who is theoretically incapable of providing input in medical decisions. I feel helpless.
But I refuse to become a victim of this system. I will advocate, or bully if needed, to get the medical care I need under my terms. I won’t be held hostage by other people’s ideas about the sacredness of life, of who gets to live under what circumstances. There is no “que sera” ending. It’s time for everyone to stand up and loudly declare that they are people, not policies.
- Bringing emotions back into medicine (kevinmd.com)