THE resilience of people is awe-inspiring. In the darkest of crannies and nooks, the strength that is within us can lead to us to light. In individuals, that tiny flicker of light can give rise to unprecedented amounts of courage, energy, kindness and joy. In the lives of nations, the resilience of its peoples, if led through the halls of principle, can lead to tolerance, magnanimity, stability and democratic values.
Unfortunately, in Pakistan, we have an uncharitable tendency to discount much of the suffering and the long-term trauma that ordinary individual citizens face. It would be accurate to say that the most ordinary of people lead, in the most ordinary of circumstances, the most extraordinary of lives. It is certainly most extraordinary of them to face up to a barrage of challenges such as terrorism, poverty, the worsening political and economic stability, testing their resilience in everyday life. One such challenge which silently gnaws at the heart of one in 10 menstruating women in the world is endometriosis. This disease which affects some 200 million women in the world literally eats into the very insides of a person and drains the physical and mental strength with which they face the world.
Endometriosis is a condition where tissue similar to that found in the lining of the womb grows elsewhere in the body, such as on the ovaries and in the fallopian tubes. Symptoms can include lower abdomen or back pain, severe pain during periods, pain during intercourse, bowel and bladder symptoms, and fertility problems. The symptoms can vary for different women, with some more severely affected than others.
Endometriosis can have a significant impact on some women’s lives. It is a debilitating condition characterised primarily with intense pain with no cure. The level of pain can not only cause fainting in those living with endometriosis but also take a mental toll and can cause complete paralysis in social and domestic functioning. Yet, they are there, living, working, and existing with us in our homes, social spaces and workplaces.
Endometriosis is not a rare disease in Pakistan.
The amount of energy that they expend on just functioning and adding to our productivity as a society is colossal. Endometriosis is not a rare disease in Pakistan, it is estimated that some 25 per cent of all laparoscopies done in the country find traces of endometriosis. A condition that has such a vast impact upon the lives of such a huge number of women needs to be addressed. Yet, this disease remains shrouded because many doctors are misinformed about the disease; then there is a major lack of awareness, funding, research into diagnosis coupled with the cultural silence and taboo around women’s bodies, menstrual cycles and health.
The resilience of patients of endometriosis is not only to be admired but should be taken as a source of inspiration to take action as a society and state which attempts to grant its citizens the rights with which they can enjoy a safe, respectful and healthy life. Yes, Pakistan does not have an explicit right to health enshrined in the Constitution. We do, however, have a jurisprudence developed around Articles 9 and 14 of the Constitution to guarantee the right to healthcare to ensure the highest attainable standard of physical and mental health. The Supreme Court has recently stressed on the availability of access to all kinds of medical services to everyone without discrimination. Endometriosis and its affectees on the other hand remain under the radar and the shroud of societal invisibility not only denies them proper healthcare but also recognition of their pain. However, the state is obligated under the dictates of its moral and political authority to grant them not only that recognition but also cater to and facilitate them with its resources.
It is partly because of this, that the US Congress passed a law to get funding into endometriosis research programmes. There is also the Endometriosis CARE Act of 2022 introduced in the Congress attempting to get more funding and raise awareness and education with respect to endometriosis. Considering that many are unaware of endometriosis, such targeted legislation is a good starting point. In Pakistan, we recently had the 2020 Rights of Persons with Disability Act; however, endometriosis is not considered a disability to enable women to get benefit of the legislation. What is needed is research backed by legislation attempting to understand not only the disease but also to counter the multidimensional barricades that such women face to properly realise their right to health in combating this disease.
The writer is a litigator based in Islamabad.
Published in Dawn, July 19th, 2023
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