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Submitted by suzi_sangi on 3 September 2018
A young woman, spectacled, shoulder length hair in a red dress in the foreground and holding a glass of wine. In the background are a few tables and blurred images of 2 people in blue shirt and green tshirt pulling chairs

Suzanne Sangi is a 22-year-old who was recently diagnosed with Lupus, a chronic illness, which damages many parts of the body, including the joints, kidneys and heart. Here she talks about the pain that you can’t always see, and healing that you can always be a part of.

For a long time, I have followed stories of women who have shared their experiences with chronic pain. I didn’t know that acknowledging pain would only be the starting point to what I would like to call the sparkling cloak of invisibility reserved for women and men at the ‘prime’ of their life.

A few months ago, my health spiralled into a series of illnesses beginning with my nerves feeling like they were infused with pins and needles. Every step was painful.

And what I was doing at that time?

Road tripping across mountains, covering a music festival out in the cold open and talking to people – always having a damn good time despite the pain. I went to see a doctor and the whole time he would address me in third person, always looking at my dad for answers to questions like “does she eat meat?” I told him I was 22 and would probably know that for myself. And then just when I was getting better, my stomach started revolting against anything I ate – nausea and vomiting was everyday life – I couldn’t contain anything inside me. We tested for infections and organ malfunctions but found nothing wrong, so it was probably good old food poisoning. The skin of my face developed angry rashes and felt like it was aflame each time I was even minimally exposed to sunlight. My muscles were getting softer and almost every evening, I was down with a low-grade fever.

Diagnosed with Lupus

It got better and then it got worse, but this time we discovered fancier problems – my cortisol and its vague predecessor ACTH, a hormone nobody talked about, was at an all-time low. But we couldn’t figure out why, so the doctor put me on a half-hearted treatment of low dosage steroids, and thereafter, I hopped from one hospital to another until I was diagnosed with Systematic Lupus Erythematosus (SLE), an autoimmune disease which had hit my kidneys – detected just in time before it became chronic and needed a transplant.

From there, the story begins: my relationship with a chronic illness in which 90% affected are women, with the majority being Asian and Hispanic. I could even tell Donald Trump hey, my self-destruct button is bigger than yours.

Unbearable symptoms

Six cycles of chemotherapy, an emergency flare-up in between, along with all my symptoms coming together at once – anaemia, rheumatoid arthritis, pericarditis (inflammation of heart muscles), bursitis (inflammation of joints), steroid induced blood sugar, high BP, uncontrollable chills because of some sort of viral infection that was so subtle it couldn’t even be detected in my blood. My diet being the strictest you could imagine, I once tried to push my luck beyond the one sachet of my daily salt allowance and ended up breathless and giddy. So it was life or death, accepted. Sanitizing myself and my space to a level of OCD would become reflex actions due to the generous dose of immune suppression drugs I took everyday, to keep away those infections that seemed to have gotten a taste for the special cloak.

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So between hospital visits and staying at home, what did I do?

Rapid weight loss and keeping the public image

I worked. First from home and then I went to office. I had lost more than 12 kgs in a week, so I looked much better in my clothes. Only my face had bloated and gone completely out of shape, but I kept it covered with a facemask to keep away infections in public places. This way I could also avoid an overload of curious questions. People were incredibly supportive, and when I explained my illness to them in bits and pieces, they understood. I was doing my job well, writing and getting published in different spaces, travelling to Geneva for an international conference (this was right after my kidney damage symptoms started showing up but I hadn’t been diagnosed for Lupus then); still being ‘successful’ in the mainstream sense. After my treatment, some acquaintances did come up to me and marvel at how good-looking I had become now without bothering to ask what I was going through. I smiled through gritted teeth.

So was I really sick?

Chemotherapy side effects

Well one couldn’t tell but my pulse would soar beyond control when I felt stressed (or talked too much or too fast sometimes), my hands would shake hidden behind the laptop screen, my vision would blur out randomly that it invited a joke or two about why I was zooming into my screen so much, I would get breathlessly tired after dressing up in the morning, my knees would wobble when I hopped up two steps on the staircase. And my fatigue would send me rushing home before sundown, hence I would be anal about my entire day’s calendar (which worked great for meetings although I could have come across as slightly pushy). Not to mention the pain that followed the chemo days – for three days, my entire body would ache like it was being pulled apart and I would soak myself in essential oils, resisting to pop painkillers until it became unbearable (to give lesser work to my kidneys as they healed). Sleep would not come to me and by the end of it, my appetite would have dropped so much I was much like a zombie – darkened skin, repulsed by the sun and going crazy in my head.

Then voila! I would pick back up and get on those calls, ready to slay both my work and personal tasks. Don’t get me wrong, a huge part of my healing comes from working and engaging with multiple interests, and I’ve been lucky to have hugely supportive systems. But the point is that it hasn’t been easy. At all. I owe so much to those who have cared for me and loved me. But I also owe myself a chance to speak about what I and hundreds of other women go through everyday.

Understanding Lupus

Lupus is hard and a little research will dig up more stuff that might give you a bit of a scare, but it’s manageable with the right treatment, strict diet (especially for kidney damage) and lots of self-care, even when you’re constantly plagued with a hundred conditions. The first time I read up about SLE on Wikipedia, I admit I honestly believed I wouldn’t live past 15 years. The prognosis that you see on Google also doesn’t help at all. But then I delved into all the research that was going on – I discovered the Lupus Research Alliance, an incredible organisation based of out the US, that is forefront in leading research towards a care for the condition. I joined the community and began speaking to other patients and discovered my little niche of Lupus nephritis (when the kidneys have been damaged) and even then realized that no two Lupus conditions are exactly the same in terms of all the symptoms that could fall together. It was like somebody was busy playing permutations and combinations with immune systems that had gone rogue, and flipped the tale to what makes you stronger kills you. 

Advocacy for better health

Through it all, I kept thinking about those who never got diagnosed. There was a reason why Lupus has a one in a million occurrence – we are just not able to detect it. How many people have heard about ANA (antinuclear antibody) tests that have a 90% accuracy rate? Or are able to access a biopsy which is the only 100% foolproof reliable test for Lupus. So my prayer each night is not for me to be miraculously cured, but for breakthrough findings for a cure, better access to health care for everybody, and more advocacies to help people cope with complicated illnesses all over the world.

My greatest fear in life is to live without compassion, for others and for ourselves. So, when we hear about pain that we cannot see just now, it doesn’t mean it hurts any less. When it comes from a person who seems to being doing well, it doesn’t mean they’re faking it. And when it comes from a young woman or man who seems to be getting on just fine, all you need to do is keep up with the details and you will know how to make it slightly easier for them.

(Suzanne Sangi is a writer, novelist and Cultural Studies enthusiast. Her book 'Facebook Phantom' published when she was 17 was recently featured on The Hindu's list of '5 books by Indian authors you should read (In School)’. She has published articles about politics, faith, social movements and pop culture on The Scroll, The New Indian Express, and other national journals.)

Read how Gopa handles the pain and diagnosis of Lupus Nephritis 

 

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