This is a “suicide” note left by a ME/CFS sufferer who sought and found relief from her suffering via legal, medically assisted suicide. She says this manifesto took her months to write, which I do not doubt a bit: it is long, detailed and polished and was written when she was feeling terrible. She wrote it with the intent to describe her almost indescribable pain and experience, and to convince others to take action on behalf of ME/CFS sufferers, both of which are lofty communication goals when anyone is seriously ill.
Describing and convincing have been my most impossible endeavors since I’ve been seriously ill myself and I think I have mostly failed, judging by others’ reactions to everything I’ve managed to gather the physical and emotional grit to attempt to communicate: that I am seriously, hopelessly ill with an incurable, progressive disease, that there is no bottom to how bad this can get, and it matters not what anyone thinks about it. Some things are just true regardless of whether anyone believes it.
In this note, ME/CFS patient Anne Örtegren describes symptoms and dilemmas I have experienced myself and she foresees logical outcomes to her predicament, something sick people and especially sick women are never allowed to do because catastrophization. For example, she knows that her heightened sensitivity to light and sound will make treatment or recovery in a hospital setting impossible where the standard of care in that environment requires constant activity and interruptions, and provides no privacy and no escape from the harsh industrial lighting, interrogations by (allegedly) well meaning staff and the general hustle and bustle of capitalistic money making on the backs and bodies of sick and dying people.
That is but one example of a sick person making informed prognostications regarding likely outcomes of the things other people want to do to us, and as someone who shares these sensitivities to light and sound (and therefore an aversion to hospital settings) as but one example of our shared experience of being seriously ill, I appreciated her spelling it out. I also feel extremely sad that she had to, and furious that no one who allegedly cared about her wellbeing including medical professionals who should be fucking sensitive to the actual needs of real patients could make the leap themselves. There are many such examples in this letter.
See for yourselves, and understand that as illuminating and raw as this letter is, it’s also been edited by the publisher and a so-called suicide prevention expert because the bottom line everywhere appears to be that there is no such thing as rational suicide or euthanasia because well people and people who make money off of the long-term sick and dying say so. And because living in this capitalistic, patriarchal nightmare is so hideous for so many people that “suicide contagion” exists, where just knowing that someone, somewhere had whatever it took to end themselves is likely to cause untold numbers of happy, healthy consumers with bright futures to do the same damn thing. Yeah that’s it, let’s keep telling ourselves that.
The letter as published is reprinted below. The unedited letter supposedly exists online somewhere if anyone cares to look and has the energy to figure out how and where the edited version differs from the original. Comments are open below.