Shruti Pushkarna: Not all disabilities are visible: You don’t always have to see it to believe it

21 Oct,2021

Shruti PushkarnaBy Shruti Pushkarna

 

The other day, I was hanging out with a seven-year-old who excitedly put her games and toys on display for me. And then she invited me to play her favourite game, ‘Memory’. Happily losing to her, I noticed how she swiftly matched the pieces, almost unconsciously reinforcing the associations in her nascent mind.

 

Associations. Perceptions. Stereotypes. It’s a vicious circle.

 

Think Disability. What pops up in your head? A wheelchair, crutches, white cane, physical deformity or maybe mental incongruity?

 

Over the years, we have come to identify disability with either an assistive aid that reduces the inability (to walk, stand, see, hear, speak) or an oddity that separates ‘them’ from ‘us’.

 

Essentially, it’s a physically visible or obvious association that helps us recognise and categorise a person with disability.

 

But what about a condition that might not require an assistive equipment or is evident in external appearance?

 

An invisible disability is a physical, mental or neurological condition that is not apparent and yet it limits a person’s movements, sensory abilities and activities of daily living. These include Diabetes, Sarcoidosis, Ankylosing Spondylitis, Hepatitis C, Chronic Fatigue Syndrome, Traumatic Brain Injury, Inflammatory Bowel Disease and so on. And not to forget the latest one, Long Covid.

 

Last year, I wrote a piece on how persons with invisible disabilities face discrimination, dismissal and rejection by the society. My articulations were based on literature, lived experiences of people and portrayals in the media.

 

Today my words emanate from a personal ordeal. My skirmish with Covid has brought me one step closer to the idea of living with a debilitating condition that is not only hard to diagnose but harder to explain to people around you.

 

A Colorado-based organisation, The Invisible Disabilities Association, began hosting Invisible Disabilities Week (IDW) in 2014. This year IDW is being observed from October 17-23, to spread awareness, create educational programmes and advocate for supportive legislation.

 

The Invisible Disabilities Awareness campaign encourages people to participate and share their own stories of #visiblecourage. This prompted me to recount my ongoing episode.

 

(Disclaimer-In all likelihood mine is not a lifelong condition.)

 

For me, Covid itself was not all that bad. I had the usual fever, congestion and fatigue, but what ensued a month after recovery, was much worse. The Delta variant attacked my gut, something many other patients have reported as well. Except five months on, my symptoms persist. This is despite multiple clinical examinations, tests, biopsies and what not.  During and post-Covid, my body has been subjected to medicines like never before. And I wonder to what end.

 

Covid has changed the definition of normalcy. Both physical and mental.

 

On the surface, no one can call me sick. I lead a so-called ‘normal’ life, go out to work every day, manage my household, attend to the needs of my family and socialise to whatever extent I can.

 

Underneath, I struggle every moment. With new symptoms, frequently altered medication, alternate therapies, home remedies, et cetera.

 

Initially, I found some solace in reading about the ‘Covid Long Haulers’ and some universal symptoms, like the loss of smell and taste, brain fog, difficulty in word recall, muscle weakness and so on. But as people around me recovered at a decent pace, a feeling of isolation started to set in.

 

It irks to not be able to eat, drink or sleep properly, for months. As an inquisitive caregiver (and patient), I have always questioned doctors and researched for information online. All to acquire a better understanding and awareness.

 

Unfortunately, there is little material on the aftermath of Covid, when it comes to prolonged illnesses. There are enough news reports citing the rise or decline in the numbers on a daily, weekly, monthly basis. They also chart out comparisons between states and countries with respect to the intensity of infection, treatments and vaccine administration.

 

But as someone who is battling to accept the adverse effects of Covid on a daily basis, it’s important to know if I’m not alone. It’s important to know what are the recovery rates in varied age groups, does it get better in a few months or a year, do I need to see a specialist or simply let my body heal? First-hand accounts on social media prove helpful but there is a need to collate data from the infected, recovered and ailing patients across the globe.

 

The impact of Covid on mental health has been captured in statistical detail. We need similar detailed accounts of other invisible conditions, like gastrointestinal enteritis, ulcerative colitis, renal disorders or liver dysfunctions. Certain side-effects of Covid treatments like the loss of eyesight due to optic nerve damage have gone unreported.

 

Nearing two years of the outbreak, it’s time to stop the scaremongering and help people understand each other’s challenges so that ‘anxiety and trauma’ don’t replace ‘common cold and cough’ for the future generations.

 

Shruti Pushkarna is a former journalist who now works as a programmes and media specialist for the inclusion of persons with disabilities. Shruti writes for MxMIndia every other Thursday. Her views here are personal. She can be reached via Twitter at @shrutipushkarna

 

 

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