It felt like the innocuous game of “how many fingers am I holding up?” had gone horribly awry.
At 12, I started losing vision in my right eye. Soon, I could barely see my own hand when I closed my functional eye and attempted to “exercise” my deteriorating one. The doctors promptly provided the clinical term for it: Toxoplasmosis, an infection caused by a parasite found in cat faeces, undercooked meat and contaminated water, which affects the eyesight of immunocompromised individuals, along with causing lung infections and brain inflammation.
Beginning to lose my sense of sight at such a young age pretty much felt like life, as I knew it, was about to end. But what I then considered a terrifying twilight now seems like a soft golden glow.
When I turned fifteen, I was diagnosed with systemic lupus erythematosus, an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. My doctor suggested I be put on a medication used in chemotherapy that also suppresses the immune system. But my father vehemently opposed the treatment because one of its side-effects was infertility.
The next year, my mother, sister and I left India and fled to the Philippines because my father tried to kill me. He had physically, verbally, emotionally and sexually abused me till I was 16. It started with him calling me a “burden” and wishing me dead because expenses at home were mounting on account of my compounding illnesses.
All my life, he’d convinced me that no one would believe me if I tried to tell them what he had done. He even filed a missing person case against me after we escaped from him.
We lived in Manila with my aunt for about 13 years from 2006 to 2019. There, my condition continued to deteriorate and I was subsequently diagnosed with fibromyalgia, which caused widespread musculoskeletal pain accompanied by fatigue, excess sleep, and issues involving mood and memory.
This, along with a host of 22 lupus-associated conditions, some of which include vasculitis (which blocks the flow of oxygen to the brain and can lead to a stroke); optic neuritis (which damages the optic nerve and causes temporary vision loss); adenomyosis and endometriosis (where tissues that normally line the inside of your uterus begin to grow within and outside your uterus respectively); axonal, segmental, lateral and peripheral neuropathy (which causes multiple sets of nerves to dysfunction, resulting in muscle weakness and pain in the affected area); rheumatoid arthritis (where the immune system erroneously attacks healthy cells causing inflammation in the joints); and lumbar scoliosis (which causes a sideways curve in the lower portion of the spine).
We made a four-day trip to India in 2011 for my sister’s wedding and eventually ended up moving to Mumbai in 2019 to be closer to her and her daughter. By then, I had lost 53 per cent of my bone density, thanks to the powerful steroids I was put on, and was mostly bedridden.
Living with my illnesses and the repercussions of my past abuse also left me vulnerable to mental health issues. I had to consult an entire panel of doctors for my treatments which was daunting, to say the least. In India, doctors don’t particularly like working with other doctors. And even if they do agree to work collaboratively, the patient is expected to relay the messages between them.
Thankfully, I now have one physician, who is the focal point of all my clinical interactions. I also never realised how life-altering it is to find the right psychiatrist because in the past, my counsellors always blamed me for my self-harm.
My current psychiatrist understands that I self-harm because it’s the only thing I can control when everything around me hits the skids. We speak every couple of weeks and he gently inquires if I’ve harmed myself or had suicidal thoughts. And he never makes me feel ashamed to say “yes.” Instead, he’ll educate me about how I can recognise the triggers and cope with them. And if I do end up self-harming even after that, my physician and he jointly tell me how to clean the wound depending on the severity, whether it needs bandaging, whether it needs to breathe, or be covered at all times. So it’s nice to not have judgement from your doctor.
I was also diagnosed with dissociative identity disorder (DID) two-and-a-half years ago. For the uninitiated, it’s the one James McAvoy has in Split (2016) although the portrayal of how it affects patients is quite demonising.
DID is a severe mental process that produces a lack of connection in a person’s thoughts, memories, feelings, actions or sense of identity. Patients often develop “alters” or multiple identities to deal with past experiences that are too violent, traumatic or painful to reconcile with their conscious self. It’s a horrifying experience because whenever I have an episode, I relive my past abuse and have to be consoled and reassured till it passes. I personally can’t tell you what it’s like because I just keep experiencing my childhood trauma over and over again; what I look like on the outside during an episode is something I only have secondhand knowledge of. Sometimes, even though the trauma I’m reliving feels very real, it also feels like watching a movie about someone else’s life and exhibiting a completely blank exterior.
I have good days and bad days – more bad than good – but mounting hospital bills have unfortunately been my most faithful companion to date. My previous jobs as a digital marketer and social media manager used to help offset some of these expenses but they were high-stress industries so I was compelled to hit pause on my career when the illnesses took over my life. I tried to get back into the workforce once I started feeling better but I’ve come to realise how arduous it is for people with invisible disabilities to find employment. I’ve mostly had to rely on part-time projects or fill in for friends to make some money because there have been times when the HR has withdrawn my offer letter after learning of my conditions.
I like to believe I’m good at what I do because I spend quite a lot of time on social media analysing audiences, picking up on trends and culling valuable case studies. But people don’t want to inconvenience themselves by working with someone like me because the liabilities of having me on the team outweigh the assets I can bring to the table. I do have seizures, fainting spells, dissociative episodes and panic attacks but I never let them get in the way of work. And if I’m having a particularly bad relapse, I’ll take a couple of weeks off to recuperate – the same way an able-bodied person might apply for casual leave to vacation.
But employers don’t want to take the risk so I started a fundraiser in 2019 with a target of 1.5 crores (Rs 15 million, approx $202,000). Sadly, it’s the same with friendships and relationships; most people are intimidated by the amount of supposed “baggage” they would be signing up for.
I also find it astounding how uninformed people can be while interacting with chronic patients. Strangers on the internet are always questioning the authenticity of my diseases. “How can one person have so many illnesses?” “Are you sure you’re blind in one eye? Your vision looks pretty normal.” “You don’t look sick.”
I now simply respond with, “Well, you don’t look stupid, but here we are.”
I can deal with their ignorance. But some particularly vicious people take it upon themselves to attack the veracity of my fundraiser, which has been authenticated by Milaap (the fundraising platform), and received donations from about 2,500 people.
Two years ago, a few spiteful individuals reported my fundraiser, blocking it for a week until I re-verified all my records and reports. Someone once called the hospital I was at to check if I was actually a patient there, and when they couldn’t find me because they didn’t know my surname, they wrote long posts on social media calling me a liar. Even though there are a few fake ones in circulation, genuine patients get affected when campaigns and fundraisers are questioned. My entire life depends on the fundraiser; I pay my rent, utility bills, medical bills and doctors’ fees with that money. So when my access to those funds is blocked, I can’t take my medicines, and I develop severe withdrawal symptoms, which set my progress back by several months.
I’m currently suffering from long Covid, which causes people to experience persistent, returning or new symptoms a month or more after getting infected. It has completely derailed my treatment since my doctors spent the last few months prepping me for the vaccine. I got my first dose a week ago and am still reeling from the after-effects. My arms and legs have started swelling up and preliminary scans reveal cellular inflammation, so, I now have to begin convalescing from that.
As we speak, I’m putting together an anxiety box containing treasured objects and pictures of my favourite people along with notes they’ve written me through the years. Sometimes, all you can do when you’re in a sinking ship surrounded by hungry sharks is watch the sun go over the horizon.
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