How do you date when your body doesn't cooperate? 

Sometimes the process of getting ready for a date is even better than the actual date itself. You pick an outfit that says “I’m hot”, but still leaves enough for the imagination. You use lipstick (the one that’s been gathering dust since lockdown was announced). But then, you suddenly feel that familiar pain in your chest that makes you stop in your steps.

Living with an unpredictable chronic illness affects every aspect of your life — your work, your leisure and even your pleasure.

Like me, nearly one out of every 100 people live with a debilitating autoinflammatory condition called Hidradenitis Suppurtiva (HS). Depending on the severity of the illness, you could start developing abscesses in different parts of the body — including between the breasts, underarms and your private areas.

Opening up to someone emotionally and physically is difficult enough without having to explain why parts of your body are inflamed or oozing blood randomly. HS flares can be triggered by anything from stress, menstrual cycles, to eating nightshade vegetables like capsicum and tomatoes. So feeling sexy or being emotionally available goes out of the window when you’re mostly just overwhelmed by the guilt that something you did — or ate — possibly triggered another episode.

Till date, there’s no cure for HS. So patients are prescribed a combination of antibiotics, immunosuppressants and laser therapy with the hope that something will work. Consistently being on a cocktail of medication means that it is immensely difficult to predict what your physical and mental health will be like when you make plans. More than once I’ve had to cancel dates and social events because I woke up flaring up in one or more spots. In such situations your options are basically: suck it up, or take a painkiller and sleep — all while feeling extremely betrayed by your own body.

Social media certainly doesn’t help. The latest aesthetic in makeup is called the ‘clean girl’ trend, where the emphasis is on clear skin, slicked down hair and minimal makeup. By that extension, could imperfect skin then be equated to being ‘unclean?’ Anyone who has suffered with acne and been told to wash their face rigorously would agree. Even in the most ‘body positive’ representation in mainstream media, one would struggle to find people with skin imperfections that convey that it’s okay to have scars and spots.

This is where the online HS communities have helped the most. Being surrounded by people who understand your experience is a welcome relief. From the many strangers I’ve interacted with, I have learned that sometimes, we can tend to magnify our own illness in our mind and often assume that people will react negatively to it. So whether it’s a new partner or even a friend, it doesn’t hurt to be transparent — as long as you’re comfortable with it.

Your illness is not going anywhere, so be upfront about it, explain how living with it makes your life slightly unpredictable. And if someone genuinely cares about you, they will make the effort to understand and acknowledge it in the way that you need.

Sherina Poyyail (she/they) is a Mumbai-based journalist and content strategist whose work revolves around gender, mental health and the future of work. They can be found hoarding books instead of reading them or overcaffeinating and ranting on Twitter at @sherinapoyyail.

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