A few months ago, I had to cancel a much desired trip because I was feeling too exhausted to travel. But this gave me the opportunity to attend a film festival — Skin Stories: love. desire. disability. There was one film I had been wanting to watch — Jennifer Brea’s Unrest — and when I finally did that day, I felt overwhelmed. By everything, but perhaps most of all by Brea’s courage and the articulations of those featured in the film who lived with ME/CFS (myalgic encephalomyelitis, also earlier known as chronic fatigue syndrome, a condition which leaves the patient fatigued and unable to perform day-to-day physical functions they would otherwise perform.)
My silence hit me then. How had it not even occurred to me to talk of my experience of living with this — this thing, that lay claim to so much of my life, that structured my every move, something that I’d been living with for years now — to people around me, let alone in my work? I had not then, and am not sure whether I do so now, seen myself too as living with a disability, despite its incessant effect on most of my being.
I remembered a session on disability and sexuality in a training workshop I’d been part of a few months earlier. A friend and I were conducting this session and while we both spoke of our lives, our gender and our sexuality, only he spoke of his disability, and how it was part of his life. It had not occurred to me to do so, even though I had made my plans very carefully. I had rested the previous two days at home and had scheduled my next work meeting a day after. And I had done this all by rote.
Around five years ago, I realised, over several months, that I was running unusually low on energy and was feeling more and more tired. I’d get up in the morning and my first words would be ‘Fuck, I am so exhausted!’ Very often I’d wake up with a lot of body ache, bad headaches, feverishness. The aches and low grade fever would stay the whole day and recur every few days. I was unwell more than half the month I noted, once I started writing down the pattern.
I worked from home, but even my low travel schedule began exhausting me. I’d have a shower and breakfast and be ready to sleep again. If I forced myself to work, I’d take longer to do what I did and then feel so tired that I’d end up sleeping the rest of the day. As weeks turned into months, I increased my sleeping time at night and started taking regular naps in the afternoon, dividing my day to have small windows to work.
Some days, even reading and concentrating on fiction was too tiring. That scared me. I have no idea what to do with myself if I cannot read. I am a slow writer and I can deal with periods of not writing. But reading has always been there.
My regular doctor who has been treating me for years said my tests did not show anything except some inflammation in the body. I tried B12 and D3 and felt some upsurge in energy, but my overall condition remained the same. I met rheumatologists and other doctors. All seemed to agree that there was some autoimmune disease but it was not clear what, until I met a friend’s doctor in another city and she suggested that what I could have was chronic fatigue syndrome, CFS.
I was actually quite relieved then, to have a name for what was happening with me. She suggested an SSRI, an anti-anxiety drug to help with my symptoms. I tried to tell her that I was not depressed. In fact I had been through a few rounds of depression, some lasting long periods of time, and this was not one of those. She said that the SSRI was not to treat depression but to help kick-start my metabolism. My doctors in Bombay agreed with the line of treatment.
I have now been on the SSRI for over four years. The dose was increased steadily till we figured a point where it stabilised. I had, after the first few months, begun to feel better. I could work more, I had fewer days of getting up feeling exhausted, and fewer crashes. After a couple of years we tried to cut the dose down and the effect was rather drastic. I went back to the then optimum dose.
But four years later, I was feeling a downslide. I was back to re-organising my life all over again. Recalibrating, it is called. Or counting spoons. Benign sounding words that I found myself using often to myself and the few friends who knew. But behind this there was a strong feeling of dis-ease, and discontent, a growing incomprehension. My life was unraveling again from the fragile balance I’d struggled hard to achieve.
It was then that I watched Unrest.
Something shifted within. I decided to talk and to connect. I joined a group of people living with ME/CFS on Facebook, another one with Queer/LGBT+ people living with this. The discussions on these groups were bracing, overwhelming, but also filled me with a deep sadness at how drastically people’s lives had been affected. It put mine in perspective, but also worried me that perhaps I was staring at a dark downward spiral ahead. It caused me unrest. I managed to write an introduction to the group only after a couple of months.
Meanwhile my health was getting worse. I met my doctors again, did a fresh round of medical tests and armed with new information, had a long conversation on what I’d been reading. And found myself facing a googly. My doctor, who has never denied or belittled any of my experiences and has never asked me to push my boundaries, asked me, ‘So you have decided that you have CFS?’ I stopped, puzzled. Hadn’t we all?
He indicated that we still did not know enough to reach a definitive diagnosis, but what had worked so far was basically the SSRI.
One of the things he said that stuck me was the possibility of ‘somatisation of depression.’ That perhaps my depressions of yore had changed form and caused some shift and were now affecting me in this manner.
He did not want to rush to a diagnosis, but was trying to see what worked to give me relief.
It seemed fair, and yet was somehow deflating.
It’s been a few months since and I am not sure anymore what it is that I have. I am not sure if I now belong on the group of people living with ME/CFS that I had joined just a few months ago. I am not sure what this depression means, if it is that. But I also no longer understand what this stable state of being means either.
Am I dealing with things well because there are these chemicals making me happy? So is what I am feeling ‘real’? At least my training of sitting with endless waiting for words has taught me this — there are ways of being unsure, uncertain, of doubting yourself.
Chronic illness, unending fatigue and pain, change everything. Not just in the more tangible ways but even more in how you begin to barter with yourself, your energy and your inclination. You swing between accepting and resisting, often reaching a point of peace, just to find, that it was a mere stop, you are not really home.
When your ability to be physically present reduces, when you start prioritising without wanting to, you begin to question yourself more and more. And then you sit yourself down and remind yourself of what you have learned from the experiences of others and try a fair-minded gentleness with yourself. Sometimes it works, some days you add to your restless nights and fog filled days. Within this, your relationship with people changes. You stop meeting them. Eagerly, I would ask my partner, ‘Did anyone ask about me?’ But the question was itself already defeated. I had lost space.
I meet people not because of necessity, but choice, shifting conversations to email and WhatsApp as much as possible.
The digital life is so perfect for carving spaces of interaction and disconnect and I’ve found that I use it more and more. But as I find both intimacy and camaraderie in digital spaces, I miss presence. I miss casual meetings, interactions, physical contact, smiles, the texture of skin, of hearing people’s voices, their laughter. So much that one takes for granted. One took for granted.
I have begun to realise how easy it is to become a ghost, and how fragile the digital connect can be, when only memories of physical presence abound. When you need to feel the texture of a hand on your hand and not just the word. Imagination is enough, but not all the time. The body rebels, as does skin and the rest of the senses.
So here I am, relearning again and again the boundaries of my skin, of touch, of being. And that too is something.
Shals Mahajan is a writer, layabout, part feline, somewhat hooman, genderqueer queer-feminist fellow who lives in Bombay, but mainly in their head. Their published work includes Timmi in Tangles, Timmi and Rizu, A Big Day for the Little Wheels and No Outlaws in the Gender Galaxy.
Featured image credit: Alia Sinha