BORN TO SUFFER……

First, I would like to thank you all for the amazing feedback I got on the piece about depression Mental health and Lupus.  This piece further affirmed to me that we all silently suffer with mental health challenges. Being one of those who find it really hard to open up to people, if you cannot seek professional help, please find that one person to whom you can open up and share your struggles. That really helps.

I was talking to my dad the other day about the psyche of a sick person. How, no matter how hard he tries to understand it, he never can. Sick persons, especially chronically ill ones, think on a whole different level, psychologically and emotionally. We tend to close off our feelings, we tend to ride the wave and we tend to let whatever will be, be. I remember when I was first diagnosed, I really did not grasp the magnitude of what was going on. What I was, was relieved! Finally! They found what is wrong with me; Finally! The teachers can stop whispering behind my back; Finally! I can get me some darn treatment! And so that is what it was for me; no more trial and error, no more trial drugs, no more tens of different specialists trying to deduce what was wrong. They found it! It has a name! It is Lupus and there is a course of action for it! Little did I know that this diagnosis was a double edged sword. It led to more and more tests and subsequently diagnoses. Every hospital visit from thereon out meant a new diagnosis, meant a change in drugs, meant an increase in dosage and meant alternative therapies being thrown at me. And at first, you are so bamboozled by all the fancy names that it doesn’t register. And it isn’t like now where when a new word is thrown out there, first thing is google.

Back then, I relied on my doctors for everything. And I think since I was relatively young, they tried to shield me from the truth just always saying that everything will be okay. When I was 19, I decided that 7 years had been enough time of listening to other people. I took charge of my condition and now, I was calling the shots. I would ask about side effects, I would ask about the necessity of some medication, I would refuse some courses of treatment and I said when I had had enough. And I believe, any chronically person gets to that point eventually.

So I was telling dad that my mindset is not what it used to be at 13. At 19 years old, I am well beyond my years. Because of my conditions, I have been forced to think about things people my age haven’t yet fathomed, I have taken steps and put in place measures that most people would consider drastic and not understand. But that is the psyche of a chronically ill person. I am no longer afraid of hospitals, of diagnoses, of death….. I have made my peace with what I have, the risks accompanying it and I understand my decisions. Some are made out of pure pain and misery but most are well thought out, well-crafted and well understood.

So today, I am writing mainly to the caregivers. I know sometimes, if not most of the time, you do not understand some of the decisions we make. Why we refuse treatment, why we no longer trust conventional medicine, why we no longer trust our doctors, why we are looking at alternative therapies and why sometimes we just want to be left alone – No doctors, no drugs, no visitors, nothing. A life that is scheduled and rotates around medication and doctors’ appointments is one that sucks! Trust me, 12 years later and my position still stands, it is necessary but it sucks! I live by the mantra ‘One day at a time’ but when you take it quite literally, it’s heartbreaking! A life where you cannot plan for a holiday, a life where you cannot imagine a happy future with a husband and kids in tow, where all you can envision is appointments and drugs, heartbreaking. Just planning and dreaming of anything goes against every instinct this condition has tied me down to. This is by no means a pity party, I am just trying to explain what it is like to be in my head.

So, I hope that in some way, this can change how people view us, how people understand us. If maybe you can try standing in our shoes, living in our heads, maybe, just maybe, you can try imagining what it is like to be us. But even if you cannot, I hope you can respect our decisions and know that most of the time, we are fully aware of the decisions we are making. They may suck, I know, but remember, you can never fully understand so all you have left to do it empathize.

“Empathy is about standing in someone else’s shoes, feeling with his or her heart, seeing with his or her eyes. Not only is empathy hard to outsource and automate, but it makes the world a better place”. – Daniel H. Pink