It Might Be “Ok Not to be Ok” For a Few Days But It’s Definitely Not “Ok Not to be Ok” Forever. Aka Chronically Ill. But Wait! There’s More.

Stop gaslighting everyone Jessie J!  This song and this sentiment (that it’s “ok not to be ok”) seem to be very popular amongst the very young and “neuroatypical” Tumblr crowd suffering from, among other things, anxiety and depression.  Reading the comments under the YouTube video reveals a lot, well, it reveals a lot of the same thing: young people feeling “not ok” and suffering through dark times only to reemerge triumphant in the end, and probably on addictive and expensive psych meds that will likely cause serious and even permanent side effects like involuntary muscle movements (and death).  That counts as “ok” apparently, and the “not ok” is “ok” if and only if it doesn’t go on too long and as long as you “get help.”

Of course, the side effects iatrogenic illness and injury from the psych meds themselves, including permanent neurological disability and death — and the “not ok” those cause — are worth it as long as the person is made ok now, for the time being.  Whatever “ok” means in this context because I sure as hell can’t figure it out other than that “ok” seems to mean “compliance” and specifically, willingness to engage with and submit to capitalistic patriarchal medicine.  Compliance and submission = ok.  Does this sound like it’s actually ok to not be ok?  Or does it sound like a bunch of shit?

And what happens when people are “not ok” for a long time, or forever?  Just ask someone who is chronically ill how friends and family perceive their illness once it’s gone on for months, years, or a lifetime.  In my own case, when I lost my apartment in a hurricane, had to move in with my ex-partner’s mother and was getting sicker by the day, my friends and family harassed me constantly for “updates” about the hurricane damage, my housing situation and the status of my health but I soon realized they weren’t looking for truthful reports so much as they were demanding constant assurances that I was Ok and that everything was fine.  When the truth was I had never been so not-ok in my life and considering the nature of my incurable, progressive disease I was unlikely to be “fine” ever again.  No one wants to hear that!  Hearing that makes them feel not ok!  And healthy people have to feel ok all the time no matter what, even at the expense of sick people and sick people’s ok.  So is it really ok to not be ok?  No.  Sick people have to learn to fake it if they want (or have no choice but) to maintain these relationships.  But there’s more.

After a few years of being “sick” in the context of an incurable, untreatable and progressive disease, it is possible to get used to it, to resign yourself to it, and to become relatively ok with the idea and reality of being sick and the idea and reality of always being some degree of sick and never being healthy again.  It is possible to plateau with your treatment and/or to get used to some level and degree of discomfort, misery and uncertainty and to accept the reality of being chronically and incurably ill.  To make peace with the reality of the situation where some illnesses are known to be incurable and progressive, meaning, you will be fortunate to just stay the same amount of sick you are now and to not get worse over time.  But then what happens when you get ok with it and accept it and find some kind, any kind of peace?  People accuse you of giving up, of not trying hard enough, of refusing to get better!  When you’re chronically ill, being not-ok makes everyone feel icky but if and when you ever manage to get ok with it that’s not ok either.

And the only sense I can make of that — that it’s not ok to be not-ok and it’s also not ok to be ok — is that (as above) compliance and submission to capitalistic patriarchal medicine is the only kind of ok that’s really ok, meaning that it’s the only kind that makes the well people feel better.  That chronically ill people have to consume, consume, consume, and try, try, try to not just stay the same, and not to just improve, but to literally (somehow!) cure themselves of incurable disease.  Sick people trying and consuming makes other people feel ok, regardless of what it does to the person who is actually sick, and even where the constant stress, energy expenditure and even outright sadistic abuse suffered at the hands of Western or even alternative medicine are known to make us worse.  All of that is what everyone means by ok, and that they hope you are ok right now or that you get ok soon.

The other possibility — where it’s not ok to be not-ok and it’s also not ok to be ok — is that it’s not ok to be at all, when you are chronically ill.  Isn’t it?  What else could it mean that you can’t (or shouldn’t) be this and you can’t (or shouldn’t) be that, where this and that are the only 2 options available, other than that you can’t or shouldn’t be at all?  And don’t get me wrong — I am no fan of be-ing per se and I would actually prefer to be dead than to be seriously chronically ill, where I have little or nothing to look forward to except more pain and eventual homelessness and incarceration for the literal crime of being an incurably ill female under capitalism and patriarchy.  I have always believed that some things were worse than death and being homeless (or incarcerated) as an un- or undertreated Crohn’s patient has to be one of those things — a fate truly worse than death.  Honestly, under even the best of circumstances, being an un- or undertreated Crohn’s patient is a hellish existence.  But under capitalism and patriarchy we also aren’t allowed to die — we are expected to consume, consume, consume until the cows come home.

So we can’t be ok, we can’t be not-ok, we can’t be and we also can’t not-be.  What the fuck are the seriously chronically ill supposed to do then, except to suffer terribly for the rest of our unnaturally extended, miserable, consumerist lives?  Is that what ok means?  To and for who, exactly, is any of this ok?

5 thoughts on “It Might Be “Ok Not to be Ok” For a Few Days But It’s Definitely Not “Ok Not to be Ok” Forever. Aka Chronically Ill. But Wait! There’s More.

  1. Ok, now that you said you have no objections to dying they might make you consume psyche meds, psyche doctors and psyche hospitals. But do not fear, you will be in good company! Me!

    All joking aside, I have been there, done that. I just can’t seem to get this conforming drone thing down and I keep getting myself into trouble!


  2. This blog is absolutely chock-full of references to suicide LOL. And yes, I fully expect the social media suicide squad to show up at my door. They won’t get past the threshhold without a warrant tho, cuz IMA LAWYER! And there is no way they would ever get one based on anything I’ve actually said. I’ve been very careful about that. And frankly, the euthanasia and medically-assisted dying conversation is helpful here and may even be legal in my state. Being seriously chronically ill makes the conversation socially relevant and valid, for better or worse. Meaning that it’s sometimes kind of ok to talk about but not always. Whereas I prefer full or mostly-full freedom of speech. Like why not right? It’s just words. (Rhetorical question, obviously there are plenty of reasons to silence and prevent speech under an oppressive totalitarian regime like we live under in the supposedly enlightened West).

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  3. And yeah, I can’t seem to conform either, like I am physically unable to do it. I tried for years to be relatively normal but it didn’t work. So it’s not like I’m even brave or edgy or deliberately non-conformist, I CAN NOT DO IT no matter how hard I try. I’ve mostly given up by now out of sheer exhaustion and frustration, and futility. And yes, it gets me in trouble constantly.

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  4. When I was young I lived with the illusion that we had freedom of speech, until I learned better. I learned the hard way to watch what I say and use hollow disclaimers when I write about euthanasia or even mention the word death but I am not skilled and adept at it as you are. The social media suicide squad. A bunch of pompous asses! You would think a mother who lost her son to suicide would be on this little arrogant squad but I am not. They disgust me. Let’s nip it in the bud from birth so that no one ever gets suicidal. But we can’t do that because the pompous asses of the world would not get their hero medal. They go about it the entirely wrong way. I did some research on euthanasia and found that it is only for the terminally ill and not the chronically ill. I mean if they are going to die anyway and they won’t be consuming they are not needed so allow them their assisted suicide. But the chronically ill with their constant meds, doctor appointments, medical tests and procedures? “We can’t let them go! They are our meal ticket! Let them continue to suffer.”

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  5. Another born non-conformist here. Making myself play the part of a conformist was so exhausting that it might’ve contributed to me getting cancer. That’s why my favourite movie is The Conformist. Like, I sincerely don’t know how not to die of tedium, artificiality and rolling over to chauvinism when you conform.

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