A Pause for Sophia (Sick Consciousness part 1)

To mark Severe ME Awareness Day 2021, 30 years after I first fell victim to post-viral ‘fatigue’, and 3 years since I first vowed to do it, I finally got strong enough to get a Pause tattoo.

In my August 2018 blog ME Too, or Why I Am No Longer NOT Talking To Doctors About Chronic Illness, I wrote about being inspired by the semi-colon tattoo of mental illness survivors, who use it to remind themselves that they could have chosen to end their life but didn’t; the pause sign (II) on the other hand reminds me of the millions missing whose lives are permanently on hold due to Invisibilised Illness. It signifies my solidarity with them, my Sick pride, and why I have to hold on.

A Pause in solidarity with those whose lives are on hold due to energy-limiting chronic illness

My double-fingered salute (II) is not only to show solidarity with all Invisibilised Illnesses but also to recognise the burden of Intersectional Illness: the awareness of layers of oppression suffered by those labouring under a multitude of diagnoses, marginalised identities or both.

Please note I no longer choose to use the term Invisible Illness: illnesses are only invisible if medical authorities choose not to see the blatant suffering of the Sick. Chronic illnesses are not invisible to sufferers and their carers; our pain and energy impairment are no more invisible to the compassionate naked eye than those of people suffering from cancer or diabetes. Alongside the 9000+ scientific papers attesting to the organic nature of our neuroinflammatory-autoimmune-endocrine disease, the overt commonalities and comorbidity patterns of the millions of us housebound and bedbound by them cannot continue to be ignored.

Energy limiting chronic illnesses (ELCI) are invisibilised by those with vested interests in refusing to acknowledge them. Even at this moment, doctors and medical practitioners in thrall to governments and medical insurers are colluding to gaslight us out of our rights to financial support. When the national broadcaster is being used as a propaganda machine, you know it’s time to mobilise.

It is time to stop waiting for doctors to restore our dignity; we have to demand it.

My Pause (II) signifies my pledge that:
I refuse to be kept invisible.
I refuse to be defined by a corrupt medical establishment that casts doubt on my reality.
I am no longer going to apologise for my basic needs as a chronically ill person.
I am no longer going to waste my energy defending myself to deniers.
I am proud of how I have learned to survive thanks to my peers and those who went before us.
I choose to devote my scarce capacities to strengthening the Sick community.
I choose to be proactive not reactive.
I choose to set the agenda: “Nothing About Us Without Us”
I will stand up for those too severe to tolerate standing up.
I insist on our human rights to dignity and respect.

* * *

Severe ME Day commemorates Sophia Mirza, the first person confirmed to have ME as cause of death on her coroner’s certificate following a medical inquest. She was born on 8^th August, 1973 and developed ME following multiple viral infections in her mid-twenties. However, her death was caused not as a direct result of the severe inflammation of her spinal cord which made her life a ‘living hell’, but because she was sectioned without her mother’s consent by police and health officials who broke her door down. After brutal treatment in a locked ward of a mental hospital, her health deteriorated dramatically and her body became unable to tolerate food or water. Sophia died in 2005 alone in a darkened room, unable to bear light, sound or the presence of another person. She was 32.

Sophia Mirza

This August 2021, I am proposing to redefine the word Sick. Historically, many oppressed groups seek to reclaim words hurled at them as slurs. Note this excerpt from a lecture entitled ME: what do we know (real illness or all in the mind)? given at the University of Strathclyde in October 1999 by Wessely School psychiatrist Professor Michael Sharpe:

“Purchasers and Health Care providers with hard pressed budgets are understandably reluctant to spend money on patients who are not going to die and for whom there is controversy about the ‘reality’ of their condition (and who) are in this sense undeserving of treatment…Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service.”

People with Myalgic Encephalomyelitis are sick and tired of our chronic sickness being portrayed as malingering, or our complex neurological-leading-to-cellular-metabolic-dysfunction disease being reduced to mere ‘fatigue’.

In this new era of epidemic Long COVID, it is time for us Longhaulers to start upholding the value of our hard-won insights into our condition. Those of us whose lockdown is permanent have a lot to teach the world about patience, about finding meaning in severely social-distanced lives, about surviving indefinite isolation.

Labels such as ‘undeserving sick’ or ‘illness fakers’ are beneath our contempt, and all Longhaulers – ME/CFS, Long Covid and other ELCI – must unite and rise above them.

Let us make #SICK stand for the Society for the Inclusion of Chronic Knowledge.

As a South African immigrant, and a student of Biko‘s work, I take great inspiration from the Black Consciousness philosophy that the oppressed have to free their minds before they can free their bodies. While there can be no parallel with hundreds of years of slavery, colonial occupation and apartheid, Biko’s beliefs about the necessity of building foundations of self-esteem to overcome institutionalised oppression hold true.

In the face of systematically targeted hate speech, which villifies us while simultaneously undermining our disease’s credibility and research funding capacity, we first have to affirm each other.

To honour the Severe, the Mild and Moderate have to stop hiding our struggle, and start celebrating our persistence in a world that insists our suffering doesn’t exist.

There is no shame in being Sick.

Sick Consciousness is the necessary precursor to Sick Pride, which is the progenitor of Sick Power.

As Biko’s definition of Black included all people of colour, so our definition of Sick must include the full spectrum of the neurodiverse to the chronically unwell who don’t match capitalist, patriarchal definitions of ‘fit for work’. We must stand together, defiantly insistent on our intrinsic worth and the accommodations that could easily be made for our access.

In the last 50 years, as society has progressed, the heteronormative majority have had to make way for gay, non-binary and trans realities. Now we must demand another shift in the consciousness of the privileged: beyond their status as Abled compared to the Disabled, they must be compelled to realise how very Well they are compared to the Sick.

We the Sick are less prisoners of chronic fatigue and chronic pain, and more prisoners of the Well’s chronic lack of imagination. They just cannot conceive of feeling this lousy for this long.

I understand the Well’s reluctance to acknowledge our reality, because it means becoming aware of unplumbed depths of vulnerability in themselves. I myself, a 70% bedbound person with multiple sensitivities, shy away from envisioning the gruelling daily existence of those with Very Severe ME, tube-fed and occasionally paralysed, because of my well-founded fear of descending to that state. But if we the Sick don’t start ruthlessly telling it like it is, who will? If so-called ‘Chronic Fatigue Syndrome’ was more precisely named ‘Living Death Syndrome‘, perhaps the risk of getting it might finally be taken seriously.

If you think that is an exaggeration, read the words of the mothers of the dearly departed Merryn Crofts, Emily Collingridge and Lynn Gilderdale. See the courage to continue shown by Anil van der Zee, Naomi Whittingham, Jamison Hill, Jessica Taylor-Bearman, Nevra Liz Ahmet, Ketra Wooding, Elizabeth Milo, Jehan ‘Gigi’ Joseph-Garrison, Whitney Dafoe.

Ask the irrepressible Jenny Rowbory, better known on Twitter as Stroopwaffle, bedbound since the age of 18 in 2004. She was last able to write – with incredible positivity and lack of self pity – in April 2020 before a decline following damaging spinal surgery has left her unable to type at all. Her pre-surgery life was already purgatory – if you click on nothing else, please read her blog from October 2019 where she describes surviving on 2 hours sleep a night because that was the longest time she could rest her head on a pillow without dying from lack of blood flow to her brain. Order an audiobook of her poems and support her fundraiser to get her to the US for corrective surgery here.

This August 8th, let us Pause to salute our Sophia, our Stroopwaffle and the millions of severely Sick who continue to endure.

#SICK
#SickAndProud
#LonghaulersUnite

Also by Sam Pearce:
ME Too, or Why I Am No Longer NOT Talking To Doctors About Chronic Illness August 2018
DIY Water Traction Therapy or How I Hauled My Way Back from Severe ME August 2019
#LonghaulersUnite July 2020
#LonghaulersUnite 2: Chronic COVID Time Bomb Ticking July 2021
Press Pause Feb 2015