Letters to the editor

Scroll.in readers share stories of living with pain

Readers respond to the 'Invisible Pain' series in the Pulse section.

Silent fight

The article by Kanika Sharma on pain touched a chord with me. I have been afflicted with Fibromyalgia and chronic Myofascal pain for three decades now (“Pain is the silent epidemic that India’s health systems are failing to handle”).

My headaches started when I was barely 11. I could not share my pain with anyone at home as there was no perception about it in society in general. Even though it is very common for such patients to be told that “it is all in their head”, I did not have to face such a situation. Doctors I went to did not question my pain but were not able to diagnose it either.

When they did diagnose it, about a decade after my symptoms set in fully, it was not much help to me, as they did not know how to tackle the condition. When the pain is chronic – I have not had a day without pain in 30 years – one cannot depend on painkillers. Moreover, I am not supposed to take painkillers because I also have kidney-related issue. This seems like an unfair situation.

There were many psychological issues I had to deal with due to constant pain. Letting go of my job was the hardest, as I valued my economic independence more than anything else. Having a sick child added to my burden, when I was dealing with pain issues, that confused me a great deal. Moreover, before I had my diagnosis, I really used to doubt myself and my pain, wondering if it was all just in my imagination. So I would push myself far beyond my boundaries to deal with housework and my job despite chronic sleeplessness, chronic headaches, terrible fatigue, and a sick child. I had other issues of migraine, sinusitis and the worst – endometriosis (this painful condition for 20 years).

So, the article very validating for me and it struck a chord. I can go on writing, but the many, many adjustments and compromises I had to make, as a mother, eldest daughter and a wife. Giving up my job and with a husband with unstable income and no financial discipline only added to the psychological load of dealing with an invisible illness.

The feeling of guilt of not being able to do “enough” like all other women and with my healthy, hard working mother as an example put even more pressure on me. All this pressure did not help at all. –Anuradha

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I started having migraines at the age of 18 (“No ordinary headache: ‘I wouldn’t even wish this upon my enemy’”). I would first have an aura — I would see flashing colours for about an hour. This would be followed by a severe migraine headache that would last for 12 hours and over 10 days. Alongside this, I also started suffering from vertigo.

Now, nine years later, I still suffer migraine attacks, especially in the summer, or before my period starts and if there is too much MSG in my food.

However, what I found is that taking contraceptive pills had exacerbated my headaches. My doctor told her that patients with migraine aura should not be take contraceptive pills as that can even lead to severe brain haemorrhage. – Devaki A

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I congratulate the editor of Scroll.in and the team for the excellent articles on chronic pain. I would like to see more such articles coming out and reaching the public as there is an epidemic that the medical community and people fail to understand. Keep up the good work. – Dr Madhur Chadha

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