This is not a fun story, this is not a happy story with an inspirational quote at the end. So if you are looking for something to cheer you up, keep scrolling.
I write this in an attempt to accept, embrace my reality. For it took me a year to realize that not talking about my disease is not going to take it away.
Last year, when I was diagnosed with an auto-immune bone disease which has the potency to slowly erode my bones, and cause the bones of my spinal cord to fuse into each other, potentially leaving me disabled and in excruciating pain, I did not know what to do with that information. I remember feeling numb, absent, inert. I wanted to cry but I was smiling. I don’t know why, maybe because I wanted to upkeep my pretenses of a strong woman. Or maybe because I was in denial. I think it was the latter.
The doctor told me strictly not to Google my disease. I followed his advice till up to a month from my date of diagnosis until I encountered bone-shattering, nerve-cracking- the most horrible pain I had ever felt in my life. I was unable to get up from my bed, I was unable to walk, I could not turn sides on the bed while sleeping at night without screaming in pain. It hurt so bad that my husband would often find me sitting on the bed at 1 AM crying in pain. In the morning, I could not walk and had to be almost carried by my husband. He had to help me sit down on the toilet seat and then help me get back up. It was agonising and humiliating in a way that I had never experienced before.
After that, I went to more doctors and got to understand that I was having a flare-up, and was given a high dosage of pain killers and anti-inflammatory drugs which took most of the pain away slowly in the next few weeks. And I was able to walk again.
Despite being a person who brazenly and unapologetically writes about her life and real experiences, I kept away from touching this topic for a long time. I thought if I didn’t talk about it, it would magically disappear. That one day I would wake up from the horrors of this nastiness, and realize that I was a regular, normal 27-year-old woman who did not have a disease which has no cure anywhere in the world. I wished that this all would be a bad dream and out there, somewhere in the real world I was okay.
No one talks about the psychological intricacies and the emotional lesions of auto-immune diseases. People don’t believe you because ‘oh, but you look fine.’
I live in pain 24/7 on most days, I only talk about it when it is beyond my propensity to bear. Even then, you will only hear a nonchalant mention that I am hurting ‘a little bit’. My tolerance to pain is far greater than an average person, and god, every day I wish I didn’t have to be stronger than the rest of you.
Friends old and new alike, keep on saying the most random things when they get to know about my condition.
“Have you tried Yoga?”
“Sit properly, correct your posture”
“It will be fine, don’t worry”
While I know their hearts are in the right place, it does little to make me feel better. I do not have the energy or the emotional bandwidth to tell them the exhaustive list of cures I have tried, and that the amount of research I have done on my disease might as well get me a Ph.D.
When people give me well-meaning but hollow assurances like I will be fine, or that my disease is not a big deal, they invalidate my feelings of pain and worry. And that’s probably the last thing I want to hear from people that I confide into, that it’s not a big deal. Feelings of low self-esteem, loneliness are commonly experienced by people living with autoimmune diseases, and I am no exception. It does get pretty lonely up here sometimes. It has been stifling to be around friends, family who refuse to educate themselves about my disease but feel comfortable offering unsolicited and outright stupid suggestions.
Someone once told me, ‘Don’t be so negative- just be positive and everything will be fine.’
Can you believe saying something like this to someone who is possibly going through one of the worst crises of their entire lives and you blame it on their lack of optimism!
But it’s not always terrible. One of my friends who I feel comfortable with sharing my struggle to get through painful days doesn’t try to tell me to get over it, he simply says he is sorry for me and he wishes I was not in pain. That is oddly comforting.
Then comes the mental trauma of knowing that you have something that has no cure. Its an unparalleled feeling of helplessness and affliction that I do not wish upon the worst of my enemies.
Even though I lived in pain for the past 5-6 years before I was diagnosed, I did not have a clue that I could have something serious. I thought there may be a slight disorder that will be taken care of by a competent doctor. But the disease is genetic, it does not discriminate. Someone must have had it in my family at some point, and here I am today.
I have spent years and a lot of energy in trying to improve my mental health, I have taken conscious steps to work on my childhood trauma and history of abuse. But somedays, despite gathering all the strength in my body, I fail to be strong. I cry for hours and go into a downward spiral which takes days for me to get out of.
The question, ‘Why me’ never gets easier. On lonely evenings that I spend in bed, drugged on strong pain killers, my mind runs free and wild- often thinking about Karma. I tend to believe that somehow I deserve this. Maybe it’s my repentance for all the people I have hurt, for all the lies that I have told, and all the privilege I have used. Because that’s the only answer that makes the most sense. I refuse to believe that some higher power sits up there just randomly choosing people to make them miserable. Or maybe he does!
It has been a long and frustrating journey for me pursuing diagnoses, and this is often the case for people with autoimmune conditions — especially AS, that comes with a myriad of other complications.
But I have only recently realized that there is no way for me to run from it. So my disease and I are slowly learning to co-exist. I am taking care of my body so that it doesn’t turn against me. And in return, when in good mood she gives me pain-free days, sometimes I even forget for a few hours that I have AS.
I have learned that the only way for me to navigate through life with an auto-immune disease is to be a bigger bitch than her, otherwise, I know she is going to devour me whole.
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