This World Lupus Day, the wonderful people at Chronic Pain India asked me to share my story with Lupus. A monster we can’t see but we fight every single day. So, here’s the story of a miracle living a miracle (pun intended)!
Let’s start with giving you an insight on how I was growing up. I was a complete tomboy, always on the roads, troubling our neighbours, talking to whoever would listen to me. My mom started bribing me to keep quiet, which didn’t work too long. Though talkative, I was a teacher’s pet and a straight A student all through my school years. I loved outdoor games and there was never a time when I didn’t have bruises, sprains, muscle-pulls etc. However, it wasn’t as if my childhood was an entirely happy dream. I have been subjected to physical, verbal and emotional abuse at the hands of an alcoholic father. But somehow, I remained a chirpy girl.
Until Feb 1, 2005. The day that changed my life and my body forever. The day normal, as I knew it, ceased to be normal.
I woke up as a regular 12 year old with fever. When I went to brush my teeth, I fainted. It was the first time so I didn’t know what was happening. When I woke up, I was taken to a nearby hospital and my journey began. After a month of hospitalization, no diagnosis, deteriorating health, and a couple of resuscitations later (due to a flat line), I was sent back home. After a couple of months, by a stroke of luck, we were introduced to an Immunologist (Bangalore only had two then) who assured me to start heavy treatments only after he has a diagnosis. Multiple tests, hospital visits later, we had it. SLE. Systemic Lupus Erythematosus with Rheumatoid Arthritis. I was 15 and already blind in one eye (Toxoplasmosis in 2003) and I had never heard of Lupus before. Now, everyone knows it because of House MD.
Shortly after, I moved to the Philippines and had to undergo chemotherapy and a bunch of other aggressive treatments. The Lupus started affecting different parts and organs which led to new diagnoses every month.
This is when you realize that your life has changed forever. Your world has changed forever. You can no longer control your body.
This is when you realize that your life has changed forever. Your world has changed forever. You can no longer control your body. As with a cat, your body will now do as it pleases and you have to give in, love it and nurture it. While you continue to learn what the new normal is for you, you also find yourself alone in this journey. No one around you shares the same world. The same experience. No one understands what you’re going through. Since it’s an invisible illness, no one can grasp the severity of everyday challenges. Of unsolved symptoms. Of debilitating pain. Of unnerving complications. Of the love-hate relationship you now share with yourself.
Since it’s an invisible illness, no one can grasp the severity of everyday challenges. Of unsolved symptoms. Of debilitating pain. Of unnerving complications. Of the love-hate relationship you now share with yourself.
A lesser known impact of a chronic diagnosis is the effect it has on your mental health. Not only is depression a given accomplice, you also have the fear of the unknown changes your body is going through; the lack of awareness and information can aggravate the anxiety you feel every single day. And as a teenager trying to fit into a different culture in a different country, understanding puberty and trying to figure out a list of illnesses like SLE, CNS Lupus, Fibromyalgia, Neuropathy, Vasculitis, Osteoporosis etc., I sure had my work cut out for me.
Another thing I wasn’t prepared for were the massive, life-changing side-effects of all the medications I was on to control the Lupus. If Lupus didn’t affect an organ/system, a medicine did. A lot of the conditions were triggered/caused by the chemo, steroids etc. It also didn’t prepare me for the overnight weight gain and what would soon be an ongoing battle with my weight and thus, my body image and self-confidence. With every flare of the lupus, the meds are pumped up which brings back the weight. This roller coaster seems to be here for the long haul and intends to be a life-long companion bringing new conditions every time I feel we’re done. My current count is 22, all chronic.
What most people forget is all of us are fighting a battle, some we never hear about. Kindness goes a long way when it comes to acceptance and compassion has the power to heal. So, don’t forget to always be kind, understand that the person in front of you might be fighting a battle too big for you to comprehend.
Given that it’s a constant battle to stay out of depression, manage your weight and juggle the multiple symptoms and flares, it’s important to have a support system you can fall back on. A panel of doctors you completely trust. A family well informed of your triggers. A circle of friends who don’t judge you when you have to cancel that plan they’ve been excited about for months, who understand when you can’t get out of bed on certain days, who realize your world is different from theirs, who accept you as you are, and everything you come with, Lupus et al.
What most people forget is all of us are fighting a battle, some we never hear about. Kindness goes a long way when it comes to acceptance and compassion has the power to heal. So, don’t forget to always be kind, understand that the person in front of you might be fighting a battle too big for you to comprehend.
Be kind. Be compassionate. Keep kicking ass.
Karishma is a pain warrior living with 22 diseases. She is a feminist and an activist who believes in being the change she wants to see in the world. You can follow her on Twitter and Instagram or read her blog to know more about life, as she sees it.
