Two years ago, I found myself in the kind of physical pain that several pills were unable to dull. An ache so constant that I couldn’t remember a time it wasn’t there.
I lived in Hyderabad, knew my way around the city and (mostly) loved working in the development sector on women’s and child rights. Yet I struggled to find a schedule that allowed enough time for rest and play. So I decided I’d quit my job to recover from my exhaustion and pain, which I imagined was normal for the hours I kept.
But the pain continued. It was so widespread that I wished for a bed of hot water bags to sink into at the end of the day. Around that time, my therapist randomly suggested that this could be an indication of fibromyalgia. Based on her advice, I quit caffeine and took vitamin supplements. I believed wholeheartedly that someone, somewhere could officially diagnose me, explain the cause and offer a cure – and with this in mind, I began my round of doctor’s offices.
First, I went to an internal medicine doctor that my therapist recommended. She refused to diagnose me with fibromyalgia until she had eliminated all other possibilities, and until she was certain that I had been in pain for more than three months. This was despite the fact that I told her that it had already been over three months.
Even then, I found this method cruel – to leave someone in acute pain for months on end is surely not humane. Patients spend months in limbo while the pain continues, untreated. I spent thousands of rupees on tests.
When my levels of Vitamin B12 turned out to be very low, the doctor refused to consider that fibromyalgia might be the problem. She prescribed medication, and when it didn’t work, she suggested that I take injections. I will admit that there was some pain relief after this, and I started to sleep better. Unless of course, I exercised.
I went on a trek with a friend, and my knees refused to bend after a while. The doctor couldn’t explain what had happened. She dismissed it as an odd event. But it happened again, this time when I was far away from any kind of medical support in the mountains of Kashmir. My knees gave in and I found myself collapsing in the corridors of the school where I was working. I had to help myself – and with support, oils and ointment, I slowly recovered.
As soon as I could, I visited physiotherapists, orthopaedics and anyone else who would see me. Some suggested scans of my knees. Others said I was just sensitive. Some tried to work with me and eventually gave up. The worst among them were the condescending ones: questioning if I had simply overdone the exercise, or suggesting that teaching was a relaxing profession and that I should just return to it. Snorting at them in disbelief did not help. Their reactions made it easy to tell myself that I was imagining my own acute pain. I believed I was tricking the world, that I wasn’t really in pain, that I just wanted attention.
Finally, after I moved to Mumbai in late 2016, I found a doctor who was willing to work with me. She confirmed that I had fibromyalgia and gave me medication to ease my pain. I felt immense relief that I had found an answer.
I’ve been on this medication for six months. My pain has somewhat abated, but there’s still too much of it. I’ve even asked my partner what it’s like to not constantly be in pain.
Recently, I’ve been having a lot of colds. But I haven’t yet found a doctor who is able to simply admit that they don’t know whether the medicine they’re prescribing for a cold will interact badly with my pain medication. This is the least I expect out of a health care provider. It is difficult to be the only one in the conversation who is actively aware of fibromyalgia.
All of this has been made worse because of my own baggage. I grew up in a house where being ‘tough’ was very important. So when I didn’t feel tough, I pretended to be. Now when I need support or help, I think of myself as weak and disgusting.
This ‘toughness’ is a disease. It’s hard for me to accept that sometimes I cannot wash my own clothes or cook my own food. The two voices inside my head – of ‘toughness’ and vulnerability – are constantly warring with each other, and this is legitimately exhausting. So is the online literature on fibromyalgia, which reads like a death sentence – no known cause or cure, not being able to work, not being able to be independent. Exciting, isn’t it?
Despite being in pain for nearly two years, I still struggle to accept that it is real. I’ve often convinced myself that the only time my illness is real is when I can’t work, when my productivity itself comes into question. (Thank you, capitalism.)
The solace from all of this negativity comes from finding other women on the internet. Women who, like me, have had their pain and discomfort dismissed by doctors. Doctors’ lack of understanding and empathy is evident in the way they handle chronic pain, in the way diagnosis and treatment is delayed. So those of us who live with this pain have turned to a community whose members understand pain, and cheer each other on through recovery.
This doesn’t change the fact that I am exhausted a lot. I get dizzy easily. I can faint because of the pain I am in. My jaw makes terrible noises when it opens. My fingers hurt too much to even hold a pencil sometimes. My feet ache too much to stand in the local train. Sometimes I have to choose between having a bath and cooking food. Sex can be too exhausting and even if there is desire for it, there is often no energy.
And it is this physical experience that reminds me that I can’t control everything. Some days will go as planned, but others will be spent in bed with hot water bags, SOS medication, tea, Volini, and the virtual company of those who also feel this pain.
Featured image credit: Upasana Agarwal