Life's Too Long (2): And Why Not?
Pondering some more about life and death and lack of care and lingering taboos
CONTENT WARNING (CW): mental health, mental illness, anxiety, depression, death, suicidal ideation, suicide — please consider not reading beyond this point if any of these topics tend to trigger you in a bad way
Firstly, I’ve written this before and feel a need to repeat: I do not want anyone to die against their will or through lack of care. I just want people to stop raising the alarm anytime anyone so much as hints at possibly wanting to die. And I need people – especially professionals called on when any alarm is raised – to stop ignoring, dismissing, or invalidating anyone who expresses a desire to die. In my nobodiness I won’t ever be influential enough to help smash this or any other death-related taboo(s) but that will never stop me from trying.
Secondly, another point written before that probably needs repeating: No, I don’t have any plans to harm myself (or others!), please do not call emergency services on me just because I published a Substack post or whatever else that goes against your deeply ingrained ideas of life (and death).
I am staying alive, even if only to spite people.
Warning: Contains navel-gazing
As usual with my posts, there’s a lot of I, I, I and me, me, me, because I don’t like the communication style where people speak or write in first person plural, second person, or third person to make it seem as if they’re not just referencing themselves when it is clear that they are. Personally I have a real chip on my shoulder about people avoiding first person singular when speaking or writing about themselves just to appear… less so?Aside from that, in my opinion it should never be on the narrator of a story to decide that it is representative of or relatable to others: that decision lies firmly with any audience.
“…And why the [bleep] not?”
The year 2023 ended for me with a brief stay in hospital. It was my first inpatient experience in over seven years, but overall in my life I’ve had more stays in hospital than I can remember. One persistent memory that remains from each of those hospital stays is that there was almost always at least one patient expressing a desire to (be left to) die. Sometimes, not always, it was me.
No, I am not about to advocate to euthanise every patient who exclaims “please just let me die!” or words to that effect. My whole purpose of this post is that I want, no, need people to hold off on knee-jerk responses to any mention of death or dying, because that’s the usual response that I get or see and that’s precisely my issue and reason for writing this post.
I can only speak for myself here and refuse to speak for others, but it’s complicated and nuanced: Thoughts and feelings come and go. Sometimes they relate to death and when they do they can range anywhere between “The next time I go to sleep I wouldn’t mind not waking up” and “I really want to die.” Sometimes those thoughts or feelings pass naturally and no one will know because I don’t share those moments. Other times they persist and I don’t always feel strong enough to work through them alone. Which means I have to express them, in order to reach out for support. But more often than not I end up regretting doing so.
Too often when I’ve reached out to people – usually dedicated professionals or trained volunteers in the health service or not-for-profit/charity sector – the response has been a knee-jerk “Stop it!” or “Don’t say that!” or “No, you don’t!" or “Don’t think that way!” or words to that effect. It’s been the most common response I’ve experienced. The second most common response has been people raising the alarm and calling in supposed (professional) ‘helpers’ who in turn responded with “Stop it!” or “Don’t say that!” or “Don’t think that way!” or words to that effect. It just makes me think (and sometimes even say): “And why the [bleep] not?!” which isn’t a good reaction on my part because most answers I’ve had to that question have only further fed my desire to die or fueled my suicidal ideation.
While I can’t be certain, I think it’s the implied denial or disapproval that comes with responses like the ones mentioned above that trigger me. I’ve already lived a lifetime of swallowing my feelings so as to not anger, upset, or inconvenience people who held or claimed power over me. By the age of four I had already heard “STOP CRYING OR I’LL GIVE YOU A REASON TO CRY!” often enough to know not to cry for emotional reasons—or show much of any emotion, for that matter, because no matter how I acted, there was always someone there to tell me it was the wrong way. I am in my forties now and still struggle as a result. For decades I’ve done serious work on myself but it is still so hard for me to truly feel my feelings, know what they are, try to not be overwhelmed by them and express them in ways that don’t involve dissociation, shutdown, or fleeing to avoid descending into any sort of meltdown.
On the rare occasions that I know what or how I am feeling and find myself able to articulate that carefully and considerately, the worst thing anyone can do is tell me that I do not or should not feel the way I say I do or that I should not be expressing the thoughts or feelings that I am having. Maybe that works on others, I don’t know, but on me it has the adverse effect.
Whatever the (presumably good and kind) intentions behind responses in the vein of “Don’t say that!” or “Don’t think like that!” may be, I can interpret them in no other way than that my feelings in the moment aren’t valid or important (enough), to which the proverbial devil on my shoulder starts spitting into my ear that I do not matter, questioning me as to why I am still here, and mocking me for my failed attempts at ending my life. Most answers to my “And why not?!” (even when I never actually utter the question but well-meaning people volunteer their answers) exacerbate that; the fallout of that has been that I’ve found myself battling not just with thoughts like “I want to die” but increasingly with even darker beliefs such as “I need to die”—which goes to show how challenging mental illness can be to deal with (both for the person with the illness and anyone around them or called on).
Perhaps all this is solely and firmly a “me” problem in similar vein to the colloquial expression “If someone’s an anus, they’re an anus, if everyone around you is an anus, (it’s likely that) you are the anus…”. I’d be the first to admit that I am certainly at least a bit of an anus. And why not?
Anguish
At least I learned to cry again (sort of). It wasn’t that I had entirely lost my ability to cry, it’s that much of my ability to cry had been slapped and spanked out of me in childhood it’s that I required a full-on explosive meltdown first to be able to have a good and proper sob right after. While I experienced bullying, assault, grief, bereavements, physical pains and injuries, all those things drew tears but hardly more a brief cry or a few sniffles. A silver lining of that, I guess, is that self harm didn’t work (I did try). My outward emotional range in childhood was limited to incessant talking, compulsive lying, and anger—lots of it. I often felt anxious, hurt or sad, but the only way I could express those feelings was through anger. It would take years of therapy and self help to work through that, but there are aspects of me that are broken beyond repair. For the longest time I thought my inability to cry was one of those unfixables.
Then adult life brought me over a decade of chronic pain. At times it was excruciating, often debilitating, and sometimes both. But it was enough to make me cry, so cry I did. And then I found that I could cry about more than just that physical anguish.
It’s interesting how physical anguish isn’t that different from mental/emotional anguish, in the sense that whenever I expressed my anguish to other people (even people professionally trained and tasked to help me deal with it), too often I was met with denial, dismissal or disapproval; very much in the same I described above in relation to my mental anguish.
Positively life-changing surgery in 2016 means that thankfully I am no longer in chronic pain. I cry a lot less now; I mean, I cry more than I was able to before the chronic pain unleashed a new ability to cry, but less than I would like to. Which in itself is (still) anguish.
Others have it worse
Hospitalisations are the worst and best avoided at all costs. They taught me to accept that not everything is within my own control, that I can try and be as hyperindependent and self-sufficient as I can, but that I sometimes have to give up some of my agency and dignity and arrogance and trust in others more qualified than me to care for me.
They also regularly reinforced in me that I am privileged in many ways and that there are many people who have it considerably worse, but that in itself has generated additional anguish in me.
Witnessing people’s treatment of others has not been good and that’s an understatement. My recent hospital stay was my worst to date and I felt I was treated better than most other patients I witnessed around me. Some fellow patients I witnessed suffered in degrading conditions as the level of care they required just wasn’t available to them. Some of them cried out “please let me die” and I cannot look into other people’s souls to determine whether that was a genuine wish, but considering how they were (mal)treated, I can understand why they might have uttered those words.
It scared me. It still scares me.
Pressure
Much of my gripes expressed in this post are with professionals. Therefore I doubted whether to publish this post right here and now, as the UK’s National Health Service is in crisis and we’re in the middle of a junior doctor strike. As is every other public service.
Which is precisely why I decided to go ahead and publish after all. Because things need to improve. I do not blame the collective NHS workforce for what I experienced and witnessed as a patient over the years123. I am publishing this post in support of them, not against them. The same goes for every other public service and not-for-profit/charity service provider.
Perhaps if we trained, paid and treated workers better, I wouldn’t be posting this lament.
Just because something’s broken, doesn’t mean we should replace it or do away with it altogether
I love and treasure universal healthcare, detest what privatisation has done to healthcare in the UK and in other countries. Privatisation is not the answer to the issues I raised.
Nothing is ever black and white and multiple things can be true at once: There is valid criticism to be had of the NHS. Responding to valid criticism of the NHS by suggesting the UK should do away with it altogether is preposterous, but so is thingking you can “protect the NHS at all costs” by attacking anyone who raises valid criticisms of the NHS4.
It’s no better than telling me or anyone else I don’t (or shouldn’t) feel the pain or anguish or other feelings I feel when I express them.
Full circle
I am tired. Exhausted. Exasperated. And sometimes scared. And while I have no active intention to want to leave this mortal coil any time soon, I’d like to have the agency and bodily autonomy to one day be able and allowed to say: “I am done and I want out” and when that time comes, I would like that wish to be honoured humanely, rather than be countered with a knee-jerk “Stop it!” or “Don’t say that!” or “No, you don’t!" or “Don’t think that way!” or words to that effect. It’s a taboo I’d like to smash.
And why the [bleep] not?!
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In my opinion there isn’t enough staff and the staff that is there is underpaid and noticeably overworked. Moreover, in my experience, the balance within the workforce seems completely off: relatively too many lower-qualified (lower-paid) staff tasked with care tasks and responsibilities they seem ill-equipped to provide, and comparatively too few of the more qualified staff to prescribe and/or administer required treatments to patients let alone provide the level of care some patients clearly need.
I don’t know if that’s down to availability of budget or availability of staff but perhaps if the NHS were properly funded neither would be an issue.
I’ve experienced or witnessed treatment and care that was inadequate or even outright abysmal.
Some of that may be attributable to individual staff members lacking skills but perhaps if the NHS were properly funded this wouldn’t be an issue because there would be budget to train people better (or pay for people already at a higher skill level).
When I contact my (mostly online) NHS GP service any first appointment is a phone call with someone who is educated to degree level but not necessarily in the medical field, just trained to perform triage based on an intricate script. More often than not, this means they will then have to refer me (internally, within the service) to a nurse practitioner (NP) who is authorised to order certain (blood) tests or issue certain prescriptions, but for anything more they, in turn, will have to refer me (internally, within the service) to a general practitioner (GP).
In theory this system’s fine, because a lot can be done electronically and remotely and it’s great when there isn’t a practitioner available locally but you can still get an appointment reasonably swiftly because a practitioner in a different part of the country is available electronically.
In practice, however, this system can play out like a game of Snakes & Ladders: Electronic appointments are often delayed or cancelled (often last-minute), and if it’s an NP or a GP who cancels their appointment a patient cannot simply reschedule but has to re-book at triage level for an appointment to be referred once more to an NP and subsequently to a GP again.
Also, on one occasion when it was determined that I did need to be examined in person (I had an infection that caused swelling and a fever) the commute (walk-bus-train-walk-bus-walk) to the nearest available facility—and since it was freezing and snowing and I was sick, this proved quite the arduous journey (and no, I could not afford a cab).
It’s obvious to me that system not working so well in practice is down to organisation and protocol but perhaps if the NHS were properly funded this wouldn’t be an issue, because there might not be the delays and cancellations.
The exact same argument could be made about the EU, and I and other people made that argument for years and years, but people only listened to extremist screamers and shouters and that’s how the UK ended up with the disaster that was Brexit.
Neither the EU nor the NHS should be subject to a black-and-white, all-or-nothing arguments that only benefit a select few individuals who personally gain while everyone else loses. Do better.
I am tired.