I have been blessed with a talent that earns me peace, and also questions my entire existence, making me spend sleepless nights for something that’s either totally worth it in the morning or just goes down the bin. Writing, it’s writing. That and a disease. To the disease who isn’t aware of it, a fatal combination this is.
To those who are well-acquainted with me and to those who aren’t (just know me on the basis of my appearance), the common notion that crosses every mind – “She looks fine!” Well, to all such notions, once and for all, I’m not fine. And I’ve accepted that I’m not! Because being fine and not being fine are two mutually exclusive events and the existence of one rules out the possibility of the other. Again, everyone who starts or wishes to start with – “You’ve to be patient and positive.” “Be strong.” “You’ll be fine.” different combination of words with similar intentions, needs to know that being positive doesn’t mean ignoring the facts. Positivity is accepting the facts, accepting that you aren’t fine and taking all the possible wit, wisdom and efforts to outrun the things that are weighing you down with their negativity.
So here’s to Takayasu!
(If I was Chandler, I would have gone like – Could I love you anymore?!)
A rare, unusual form of vasculitis disease involving inflammation in the walls of the largest arteries in the body, i.e. the aorta and its main branches, the ones that carry the oxygenated blood to different parts and organs of the body. In simpler understandable terms,
– It’s an autoimmune disease, i.e. body’s own immune system attacks it causing inflammation in the walls of the largest arteries in the body
– It’s more common in females than in males
– It affects women of child bearing age
– Symptoms include poor blood flow to tissues and organs
– It’s called the “pulseless disease” as it can result in a weak pulse in arms, legs and organs
– It’s a rare disease. The best estimates of the disease frequency suggests that 2 or 3 cases occur each year per million people in a population
To the optimist in me – Yes, I’m rare, unique and that one in a million.
Even as I’m scribbling my way through this piece of paper, there is a constant stingy ache in my right arm with every letter I write or every word I complete, persistently reminding me that in a crowd of normal looking people, where I’m perceived to be normal, I’m actually not.
And it feels best and worst at the same time.
The above features are quite generic and hence can be found almost on any search engine. I preferred Google (my doctor being unaware of it) as I am a bestowed upon with a curious mind. Primarily I am more interested in what’s happening inside me as I think it will help me to cope and overcome things quickly. There are two kinds of people – one for whom ignorance is bliss and the other for whom acceptance is bliss. I fall in the second category.
For me, Takayasu is an invisible disorder rather disease and has its own pros and cons.
Pros – Nobody will know a thing unless you voluntarily tell them, hence you are saved from the unwanted sympathy.
Cons – At times when fatigue grips you, and the limbs give up on you, alluring you into taking that reserved seat in the train or the bus. At times it lures you into sitting when all others are standing and you tend to invite all the unwanted eyeing and glancing followed by muffled whispers and judgements.
Pros – There won’t be many changes in your appearance. However, you might gain a few temporary pounds (due to steroid medication) unlike other diseases.
Cons – At times, when you fall asleep just after a couple of hours of waking up, you are often looked upon as someone who is lazy and lethargic.
At times you feel like screaming your lungs out, “No Karen, I’m not lazy. It is the fatigue!”
Pros – You learn a lot about the human body and the aorta and arteries and your immune system.
Cons – You have a permanent feverish feeling inside you. It is like the fever resides, simmers and pops out anytime. (Symptoms may vary). Hence, you end up feeling feverish and achy around the clock.
Pros – Unlike a few other diseases where you are asked to follow a diet, this one doesn’t restrict you to follow one. You can eat anything and everything. Nothing can improve or worsen your present condition.
Cons – You have a distinguished, differed blood pressure on both your arms. At times pressure on one arm is detectable and on the other one is undetectable.
Pros – No immediate surgeries are needed. Mostly, it is controlled by medication usually comprising of corticosteroids and immuno suppressants. However depending upon the adversity angioplasty or stenting maybe required.
Cons – At times, your body aches post exertion and it’s common in all healthy individuals too. But once you have Takayasu, you tend to associate every pain or ache in your body to it at a subconscious level.
Many a times, people (even your close ones) try telling you to ignore it and stop thinking about it. Okay people, advice accepted, not executed. Because you cannot suppress a pain that’s radiating from inside you and is giving out a loud evidence of its existence. We do not have congenital insensitivity to pain, people!
On a humble note, there isn’t much you can do for someone who has an invisible disorder. All you can do is, stop judging anyone who gets tired before working or who takes up that reserved seat in a bus or train. There are chances that they are tiny warriors who are possibly fighting a war against their own immune system who has completely gone bananas and is attacking their own body.
So judge less, listen more, comment less, support more; awareness about certain things won’t hurt and it’ll help the people around you. After all we are a big fat global family. Be kind and compassionate. The world needs more of that.
Until next on living with a rare, invisible disease, cheerio!