Chronic Illness is a phenomenon which affects nearly half the population on the planet in one way or another. They are a major cause of death and more commonly disability. Out of these, rheumatic illnesses, which deal with joints and bone conditions, amount to a maximum. However, most of these illnesses are invisible and poorly understood in India, but this does not mean that people do not deal with them on a day to day basis. This series is a small insight into what life feels like with such illness while dealing with an active daily lifestyle, and how a constant battle ensues due to the same.
The most beautiful thing about having kind of a rare problem is the amount of boost it gives you to feel almost too special. You see, when a person feels down about themselves, and are searching for that one unique trait that somehow sets them apart from everyone else, while many may spend hours contemplating the true meaning of themselves, a crinkle in the ankle or a slight shift of a collarbone reminds me that there is, in fact, an unerodable part of my identity.
You see, chronic illness comes in altogether many forms, growing in many beings, manifesting itself as it pleases. For most of us, it manifests itself in a form invisible, only running through my body, often treating it as a marching field when it decides to weigh itself down, or like a light feather, when it makes me tingle all over. This makes my body exist in a form almost unpredictable, changing on a day to day basis. The alarm clock which wakes me up for class, kind of also wakes up the chronic illness in me, which I affectionately have named Alter, and it is truly up to Alter to decide the kind of day that awaits me. Alter often awakes slower than me or my body, and lets me have my head start to the day. On these days, I can have a jog, a run, proper breakfast, can take the stairs to class. It is almost like Alter is tucked in bed back in my room, taking care of my plants, while I go about my day.
The most common symbol used to describe chronic rare diseases is that of a zebra. This is because of a popular phrase in medical science, asking doctors to look for horses (more common disorders), rather than zebras (uncommon ailments) when they hear hooves. This is one of the reasons why many rare chronic illnesses remain undiagnosed.
But it does not take too long for Alter to wake up, and often at inconvenient times, it creeps up, like a child who was promised pancakes at bedtime, but found his mom missing when he woke up, both grumpy and demanding. Alter often decides to attack in Transfer of Property Class, as if he knows I have forgotten my pain medicine, he creeps up my spine, right at the time when Dr. R.K. Singh points towards me asking a question which contains too many mortgages for my liking. Alter then makes me feel like my back is on fire, and then, my mouth can only utter an ‘Urmm..’, truly failing at every attempt to sound brilliant. Its like Alter almost knows the places when performance means the most to me, and decides to show up at just those times to interfere.
Then, there are days when Alter is even worse. Its like he demands all of my attention. No matter how much I wish to keep him at bay with scented candles, or boxes of pills, Alter does not budge. At that point, it is very easy to get quite desperate. There are days when Alter makes me only lie in bed and watch dog videos on repeat, or shiver at a time when everyone can only complain about how hot it is. Then, I try to reason with Alter but he transforms into a crying child on an aeroplane, and me into its mother, trying to have an argument I most certainly will lose. I remind Alter of meetings, deadlines, internship applications which will not wait for him, or projects which I have conceived in my head. Like a stubborn child, however, Alter mocks me.
But that certainly does not mean we do not have our moments of reconciliation or joy together. There are times when we jump around furiously on getting an appointment with a doctor who has done one certificate course on understanding Alter (believe me though, certificate courses, everywhere of any kind, are a lie). You see, the beauty of our relationship probably lies in the fact that we do not understand each other at all, and yet we are one. Almost every website on the internet would possibly describe this as a toxic relationship to say the least, and then tell me 10 quick ways to get out of it, but even though we are in conflict, Alter is what is I have always known life with.
To conclude what I began with, the first time I met Alter, the first doctor who put us together, said to me that I could complain about him all I wanted, or I could accept him. He also told me to not sit on rollercoasters, and subsequently turned out to be quite a complete jerk, but he did have a point about the acceptance thing. What he made me realise was that although Alter was invisible, he did have a voice. A voice in me, a voice which could possibly to reach out to others with chronic conditions, probably feeling alone, while holding and comparing themselves constantly to ableist standards and deadlines set in stone in a cut-throat world. Betwixt all of the mess, Alter did teach me to slow down, to see how much our system made an assumption of ableness, simply because of a lack of a wheelchair or a walking stick. Alter taught me to learn to fight that injustice, to teach others that disability is not always an assistive device, it is sometimes running from one committee meeting to another, sometimes waiting in the line in the mess, hoping to not faint, and sometimes going blank in a class. Disability is multifaceted, and I would have probably not seen the layers without meeting Alter. So, yes, I do consider him to be my unique everything, from aromatic oil fanatic to inspiration to challenge the very definitions of disability, Alter has stayed through quite a bit and although he might probably never leave, I still would never give up my end of the rope in this never-ending fight.
The author of this article is a self-proclaimed aromatherapy expert and a true believer in the power of stretching. She is the bearer of many Alters with names such as Ehlers Danlos Syndrome-Type III, Fibromyalgia and an Arthritis diagnosis tossed in the mix. She is available at chroniczebraexpress@gmail.com, where she is attempting to build a support group of students with chronic illness.
-Samidha Mathur
Jury's Out 