Sick Women Theory, Hedva, 2020 (On the politics of chronic illness and oppression)

[Yann04]

I found this essay by Hedva to have some bits that I can strongly relate to as having ME. I’ll quote them down here. You’re welcome to read her full essay, which does include some political parts so I will ask we only stick to discussing the parts related to ME and Chronic Illness in this thread, in accordance to forum rules. Hedva has endometriosis and an undiagnosed disease that in her description sounds to me like it might be ME or MS.

Here are some extracts that resonated with me:

The trauma of not being seen

She discusses how there is not only physical trauma (such as worsening of the disease) when medical professionals don’t see (this can be taken literally as “seeing” but also as “understanding” and “caring for”) the medical ailments, but also a large psychological burden, trauma, which leaves one feeling worthless and doubting themselves.

In Cree, one does not say, “I am sick.” Instead, one says, “The sickness has come to me.” I love that and want to honor it.

This difference of phrase removes personal fault from develloping a disease, and it helps combat our society’s status-quo
where diseases (even genetic) are often blamed on the patient. Languages is not only shaped by how we think of things, but the way we think of things is shaped by our language (Saphir-Whorf Hypothesis).

those who are faced with their vulnerability and unbearable fragility, every day, and so have to fight for their experience to be not only honored, but first made visible. For those who, in Audre Lorde’s words, were never meant to survive: because this world was built against their survival.

most modes of political protest are internalized, lived, embodied, suffering, and no doubt invisible

someone diagnosed with a chronic illness, whose family and friends continually tell them they should exercise more.

These extracts make me feel seen.

What is so destructive about conceiving of wellness as the default, as the standard mode of existence, is that it invents illness as temporary. When being sick is an abhorrence to the norm, it allows us to conceive of care and support in the same way.

Care, in this configuration, is only required sometimes. When sickness is temporary, care is not normal.