The shock of being diagnosed with a disease and the despair of having to accept it: Part 1.

After months of physical agony, doctors, physio sessions, blood, bone, and MRI tests, after a couple of emergency room visits across three countries, I was (finally!) diagnosed with an autoimmune disease.

The shock of being diagnosed with a disease and the despair of having to accept it: Part 1.
Photo by Bruno Nascimento / Unsplash

Hallo, bonjour, hello and vanakkam!

I've been missing for nearly two years, I know, and some of you wrote to me asking 'how is your writing going?' Thanks so much, because that was in part motivation for me to get back on my desk. Allow me to catch you up to speed on what's been up with me. No, I haven't forgotten to write, although for a good while there I asked myself that too!

The year 2022 was filled with doubts, trepidation, confusion and anger. It was a trail mix of great, good, mediocre and terrible things happening all at once. Yes, I'm still talking about 2022. It's going to be a long read, so strap your seat belts on and get ready for the ride!

After months of physical agony, going back and forth between doctor visits, a bazillion useless physio sessions that left me in more pain, blood, bone, and MRI tests; after denying my pain for ages and after a couple of emergency room visits across three countries, I was (finally!) diagnosed with an autoimmune disease in September 2022. Yay!

But also, meh.

I wanted to write about this once it went into remission, but I can't wait anymore because I don't know when that day will come—and now we're in January, 2024—nearly two weeks into the year.

Black and white gif of a woman opening her eyes wide and exclaiming "Uh, oh, time flew by!"

I'd rather not talk about it, but also can't not because it consumes my being—literally. Each day since my diagnosis has been different from the other—ranging from being filled with waves of uncertainty followed by slivers of calmness. Some days I reluctantly retire for the night filled with a sense of dread and defeat. My days, nights, afternoons and evenings have been longer than ever.

To add to it, I've had to deal with people. People who don't want to have anything to do with it, or people who say "'s nothing, don't overthink it. Chill and enjoy life. You're young."

In the Tamil culture, people have the (terrible) habit of "giving advice", " sharing a quick tip" or forcing you to try some new "life hacks" mostly without any scientific proof that it works. They usually range from "Oh, you should absolutely eliminate potato from your diet", to "Did you know this magic potion made using peahen brain mixed with tar applied on your belly button for sixteen nights will cure you, and keep your genetic line safe for a hundred years?"

I shared my diagnosis with some close friends (and select acquaintances) who reacted in different ways:

  • some dismissed me and said "oh, it's in your head." Or "Pfft! Don't keep sharing sad stories."
  • some asked me if everything was OK between my partner and I (even if it isn't, how does that relate to the diagnosis I just spoke to you in detail about?)
  • some wanted to make me "feel better" and then vanished once I explained medical jargon, and spoke about being immunocompromised
  • some called me up only to ask me more about it, and once I told them, made elaborate plans to meet, said they'd share information around my disease and then ignored me like I didn't exist. This group really confused me.

I get it—people are busy and have their own stuff to deal with.

I'm dealing with stuff too, and this is how I process them all.

Then there were doctors who focused more on my uterus, which had nothing to do with my joints, than they did on me. Some assumed I'd be eager to get pregnant, and refused to prescribe medication because the only medication that would help me, would harm a foetus—a foetus that didn't even exist. 😂

One of the doctors told me "Oh, your disease is nothing! You don't seem to be able to tolerate pain like my other patients." Umm, why should I, dear doctor? Some asked me why I was not a Mrs, or why my partner hadn't accompanied me. Every hospital, bank and government form wanted me to add a 'guardian' who mostly was expected to be a male. As if by being a woman I was not adult enough to make decisions. Anyway, more on that later because it needs another post.

Through this, while my brain sparked and short-circuited from all the patriarchy and dismissals in the world, my body was saving itself from turning into a raging forest fire, or perhaps aiding the fire—I never know with this (it's a little autoimmune joke, folks!) My joints partied like there was no tomorrow, my feet gave up and I couldn't walk. My fingers got swollen and I couldn't hold a pen. For a writer, there's no greater sorrow than that.

Through the pains, I used text-to-speech to journal on my phone in rage. I cried in despair. I paced around with heat packs tied to my feet and hands, and asked myself a million times "why me, why now, why this?" I eventually found heat packs that let me sit, and I loved it.

I wallowed in self-pity. I think some part of me still does, and that's OK.

Swathi seated on a grey sofa with her feet outstretched onto a table opposite to her. She's wearing heat packs on her feet and hands.
Yes, that's a nightie and a long-sleeved shirt from Lufthansa :D

I also thought a lot and wrote myself a little journal entry.

"Everyone will give a million opinions on your life and how you should live it. They don't know how you do certain things and why you do them—just like how you don't know a thing about their lives. What's absolutely unwelcome, however well-meaning someone's intentions are, is them dismissing how you feel, or convincing you to feel a specific way."

I've stuck with it ever since.

And then, I was reminded of this tweet.

"Your intention is irrelevant if your impact is harmful. Don't use your intention to dismiss someone who tells you they're hurt by something you did. Apologize, learn, and commit to doing better."
Screenshot of a tweet that says this: "Your intention is irrelevant if your impact is harmful. Don't use your intention to dismiss someone who tells you they're hurt by something you did. Apologize, learn, and commit to doing better"

You know what's welcome though?

Nurture, care, love, warmth. Total acceptance.

I needed to know that someone was there — that I could share things with them. That my feelings were valid. Not how they dealt with their unrelated life problems, or how I should draw inspiration from a nameless saint in a cave who meditated for a hundred years and grew dreadlocks as a way to manage their pain and heartbreak. Not radio silence.

Definitely not people saying "I don't think this is real."

But you know what? There were people, friends and family who made this a hundred times better:

  • friends who gently listened to me, patiently read the information I shared with them, asked me questions and shared more details about instances from their families
  • some from the community who shared their doctor's information, gave helpful insurance advice and interesting tips to manage my pain
  • the ones who put me in touch with fellow chronic pain and autoimmune warriors just so I could learn from them
  • some who were simply there—they dropped in with food and love, cracked jokes and made me laugh. Some were just a phone call away.

To these people I'm extremely thankful.

As humans, we want to face the world bravely even when we're stuck in the loop of "receiving advice". We simply build a façade with multiple layers. We smile, we squirm, we accept people who patronise us, we go quiet and we dismiss our own selves. This happened to me too in multiple instances where I was being veered away by well-meaning people who wanted me to watch TED talks and utter divine chants. But it takes all kinds to make the world, and only when you're in murky waters do you realise the absurdness of some faiths and belief systems.

Making other people happy, and doing something for the sake of someone else will never be my truest, highest, most human and best form, especially now, when my life has changed for good. But, I'm also forever oscillating between being my fiercely authentic self and safely squirming behind a façade. I wish I had the language to retaliate. But I'm tired—physically, mentally and emotionally.

This is exactly when we forget who we are and lose our way. I told myself this, and still do:

I don't want to lose my way. I matter. And I will find my way.

Through all of this, I am yet to accept the diagnosis—the magnitude, the depth and the seriousness of it—the toll it takes, and has taken, on my family, life and career. I haven't even spoken about the bureaucracy and physical pain I'm left to deal with. This has left a huge dent, and a gaping hole in the place where I once had fruitful relationships, sent and asked for goofy pictures, had long conversations and savoured little moments of joy I would earlier easily find on a dull afternoon.

Since I wasn't fully ready to talk about my experiences, I made a few slides on my personal Instagram (You know I don't like Instagram, and yet! 🙄) at the start of 2023.

Here's what I said:

2022 was a giant wrecking ball that swung back and forth at high speed without a break. It shook the core of me and my family and changed some parts of our future for good. Without going into the details, here's what happened.

The losses:

  1. Physically battled Covid twice. It's an absolute horror. Wouldn't recommend.
  2. Managed Covid needs across time zones for people I love and who refused to cooperate. Wouldn't recommend.
  3. Got unexpectedly hospitalised in a new country where I was a tourist—on my birthday. Definitely wouldn't recommend.
  4. Hosted friends in whom I found a home and a sliver of solace before the big storm. Recommended.
  5. Fought my health in May.
  6. Shouldered a family emergency by getting on the first available flight on June 27 and stayed on till July. This was necessary.
  7. Struggled to accept a reality and beat myself up over it in July/August
  8. Wondered if things would've changed if I had a sibling. (Spoiler: Nothing changes. A struggle is a struggle, and glad I don't have siblings!)
  9. Grieved the loss of a relationship, accepted it and finally blew it out into the wind. (No timeline for this, lol)
  10. Received a physical diagnosis that joggled the core and root of me. (August)
  11. Refused to accept said diagnosis. (Also August)
  12. Found myself struggling to walk (related to the diagnosis!) and wondered how much of my life I had taken for granted. (Aug-Nov)
  13. Spent nearly four months in India running across banks, doctors, scans, insurance, bills and other bureaucratic things which irritated me but helped me make some key decisions.
  14. Flew back with wheelchair assistance and experienced what being disabled felt and meant—financially, physically and emotionally. This, despite working in the disability space.
  15. Wistfully wondered how people could walk, trek, run, bend, jump, skip or simply stand—things I could do easily and wilfully did—before all this. 
  16. Cried, punched pillows, hated people who said anything to cheer me up and went into a shell of self-loathing and self-pity.
  17. Shared important information with people and got angry when they didn't respond the way I expected them to. (This one's totally on me because I can't control anyone's reactions!)
  18. Reached out to people whom I thought mattered to me but wasn't taken seriously (this upset me)
  19. Started medication. Combated side effects. Slept due to fatigue. Blacked out from brain fog. Lost some sense of language. 
  20. Didn't read.
  21. Paused therapy.
  22. Wrote indolently.
  23. Crumbled internally.
  24. Held my body and wailed.
An open palm with three and a half pills.

Tried to crawl out of it anyway because I wanted to live and feel like myself.

There were wins too:

  1. I became more assertive and asked for what I wanted. 
  2. Got good at negotiating.
  3. Bagged fully funded scholarships to go to the U.S. for two extremely competitive conferences in my line of work. 
  4. Got better at German.
  5. Sought mentorship and received it. 
  6. Found work that value(d) me and my work as a writer.
  7. Made some fantastic friends at home and across the Atlantic who helped me see myself through their experiences. 
  8. Strangers and friends rallied to get stuff done for me—from tiny hellos to big gestures spanning flights and timezones.
  9. Discovered support groups on Twitter, Instagram and Reddit.
  10. Walked—albeit slowly.

I've just updated you about 2022. There's an entire year left. If you got this far, thanks for reading.

It's 2024, and I don't know what I want.

Severus Snape fom Harry Potter opens his hands wide and shrugs as if to say "I don't know, dude!"

More about the hows, whens and whats, and my year in 2023, in part 2, whenever I feel like writing it.

Until then, take care and be safe from judgy people.

If you get random unexplained pains, please go to a doctor and don't stop until you get solid medical advice. :) If people don't listen to you, kick up a fuss, be loud and keep talking about your health and body.