Hello there!
Did you know Feb 28 is Rare Disease Awareness Day?
Yes, that’s a thing. And no, it’s not about rare Pokémon.
A rare disease is one that affects only a very small fraction of the population. The exact fraction changes from country to country, but let’s not go down that statistical rabbit hole today.
What matters is this: there are over 7,000 rare diseases.
Seven thousand. Let that sink in.
And yet, most of them live in the margins — underfunded, under-researched, and misunderstood.
That’s why Rare Disease Day matters.
- Because it throws light on the hurdles patients face.
- Because it pushes for better research and funding.
- Because policies don’t build themselves.
- Because caregivers need support too.
- Because invisible struggles deserve to be seen.
And that brings me here.
If you’ve been following my writing for a while, you probably know that I’ve been living with a rare autoimmune condition, Idiopathic Thrombocytopenic Purpura (ITP), for over a decade now. In simple terms, my immune system gets a little confused and attacks my own blood platelets. The result? Easy bruising, easy bleeding, and a lifelong relationship with blood test reports.
But today, I’m not here to talk about diagnosis.
Not symptoms.
Not medical jargon.
No clinical lecture, promise.
Today, I want to show you what ITP looks like in real life.
The invisible things.
The small negotiations.
The quiet calculations.
The mess. The confusion. The reality checks.
Because rare doesn’t just live in hospital files.
It lives in everyday decisions.
Here’s a “What You Don’t See”
You see me swimming.
You don’t see me checking for bruises after.
You see me laughing.
You don’t see the dental procedures that made that smile possible.
You see me travel.
You don’t see the calculations behind choosing the date.
You see me attend functions.
You don’t see the rest I consciously take before, or the way my body collapses after or how long it takes to return to routine.
You see me write and post a blog.
You don’t see the umpteen ideas that never came to fruition.
You see me cook a feast on special days.
You don’t see the days I survive on fruits or curd rice for all three meals.
You see me go places.
You don’t see me forgetting routes, sometimes even my own address, while filling out forms.
You see me raising a reader.
You don’t see how many times a day I tell her I’m tired, or how books become her company when I cannot.
The Negotiation Diary
Here are things I negotiate with, daily:
Should I ignore the gum bleeding while brushing and just change the toothbrush, or should I check my platelet count?
This heaviness in my body — laziness or platelets?
Can I say yes to this event?
If yes, what do I carry, how do I travel, and how much will it cost me physically?
If not, what opportunities, joy, and connection will I miss?
How many days can I push before I need rest?
I feel tired; do I order in or cook at home because takeout might trigger a flare?
Should I take up this project or stay with independent work that gives me flexibility?
If I say yes to a trek today, am I prepared to pay for it with two days of recovery?
If I lean on someone today, will I have the strength to stand beside them when their turn comes?
Little things that make me tired
Packing for travel.
Travel.
Dressing up for events/functions (so I sometimes dress up on random days instead).
Being in packed, closed spaces.
Having outside food continuously.
Climbing stairs.
Typing, on some days.
Networking.
Maintaining a social media presence.
Talking continuously.
Seasonal changes.
Explaining my condition.
Trying to remember the names of books I’ve read and so on.
Some days, just getting up from my bed.
Some days, even being.
Living with a rare disease means negotiating every single day.
I still say I am blessed. I live in a safe environment. I have a financial cushion. I have a platform.
But imagine someone who doesn’t.
Someone who doesn’t have the privilege, the access, the time, or the voice.
So I use mine.
I write about this as many times as I can so it reaches the right people at the right time. So rare diseases don’t remain invisible.
Because rare disease doesn’t mean rare courage.
It doesn’t mean rare joy.
It just means rare understanding.
And that’s why we talk.
And yet, in the middle of all this negotiation, life happens.
Joy happens.
Work happens.
Laughter happens.
Growth happens.
A rare disease may change the pace of your life, but it does not erase its depth.
I have learnt to celebrate stable reports like festivals.
To rest without guilt (well… still learning).
To find strength in softness.
To build a life that works with my body, not against it.
If you are living with a rare condition, I see you.
If you are caring for someone who is, I see you too.
And if you are simply reading this to understand better, thank you. Understanding is where change begins.
On this Rare Disease Awareness Day, let’s choose awareness over assumption.
Compassion over curiosity.
Support over silence.
If this resonated with you, share it. You never know who needs to feel less alone today.
And if you’d like to read more stories like this, the real, the messy, the resilient, subscribe and stay with me on this journey.
Rare may be uncommon.
But hope? That’s abundant.
Holding space, holding hope.
