Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology. She works as Co-leads Programmes, at Rising Flame and is the Co-Founder of The Curio-city Collective.
Vacation with friends
I have lived with chronic pain from Fibromyalgia for more than five years now. Chronic pain that is ever present and often disabling. It has been an active member of my life these past few years and I navigate it the best I can. It has of course been part of most of the years I have been in a relationship with S.
So when I talk publicly about my pain and mention this ambiguous partner, S, I am asked: ‘Oh what does he do? Oh he knows about your illness? Oh he is still with you?’
I am forced to smile and say yes. These questions are the most common questions I have heard but unfortunately they are not the only ones! I have been asked this so often that I think a part of me has internalised it.
A year ago, S and I went on a small trip with his friends. This was our first trip with anyone other than each other. I was nervous. I rarely go on vacations with people I am not close with because of the erratic and unpredictable nature of my illness and disability.
I need breaks often, I suddenly deteriorate into pain and I come across as anti-social because of my early bedtime. Moreover, very few people knew about how bad my condition sometimes gets. S, of course, knew my condition very well.
This was a vacation I had taken with his friends after a lot of hesitation. It is difficult to associate my general peppiness with an invisible, relentless pain. But the reality is the co-existence. My way of dealing with it was not mentioning it to everyone and just taking the breaks I needed. In our pre-vacation conversation, he promised me that I could be myself and sleep whenever I wanted. I nodded and made the plans.
All part of our relationship
On our trip, I arrived late in the evening and we headed off to our stop for the night. Knowing my need to sleep immediately after travel, we just crashed. The next day onwards, we were to spend much of our time at the beach with his friends. Though we had been together for many years, I hadn’t met a lot of his friends.
I was nervous especially because I didn’t want anyone to feel pity for me; a oh-so common reaction to my illness and disability. My books, my medicines, all my safety nets were by my side as we headed into this vacation. He, as he is accustomed to do, checked on me every few hours and whispered that I could nap whenever I felt like it. It was reassuring.
Over the years of being with me, he had learned to notice the small signs of fatigue and pain. One of those evenings by the beach, after roaming around in the sun, a migraine creeped up on me. I sat with everyone for as long as I could before heading off to bed. It was early, like 6 pm early. This I have learned is not something people my age relate to - going to bed at 6 pm. But, S just said okay, gave me a peck on my cheek and went out for dinner with his friends.
Sleeping early, not mixing alcohol with my meds, eating only when I can, eating tonnes of sugar when I am sad and chugging lime sodas to relieve headaches were all part of our relationship. One we had built with care and of course, numerous arguments.
Not easy to defy the ‘norm’
All around us we see relationships of a certain kind. Date nights that are regular, outdoors. Trips together. Sex periodically. And so many other couples things. Many of these didn’t fit us and my disability made much of this harder. It is not easy to defy the ‘norm’ that society not just accepts but rewards.
Over the years of being together, we have had to carefully build a love language of Volini, hot packs, yummy home cooked dinners, walks in parks and asking the difficult questions like: Have you taken your meds?
Illness has taken me by surprise and definitely has taken my relationship by surprise. It has been hard for it to not be part of the relationship. When it is so much a part of me, can I truly keep it away from him?
Somedays, we don’t mention it at all and go out in the evening for dinner, a drink (neither of us are much drinkers) and return home to turn in early. Other days, one of us cooks comfort food the other loves and we eat with our own TV shows with headsets in bed. Quiet presence. Fingers touching. Hot packs for company.
Rising Flame in collaboration with Love Matters presents a series of essays on love, intimacy, relationships and disability. Dil Vil Pyaar Vyaar is an effort to amplify voices of disabled women; narratives on love that seldom are seen in mainstream discussions on romance. Starting February 14th, we will be releasing four pieces authored by women with disabilities giving us a sneak peek into their lives, dreaming and hoping for the possibilities of love.
To protect the identity, the person in the picture is a model.