Two years: I don’t take this for granted

It has been two years since I started ketamine treatment, and it is still working.  I’m currently dealing with pretty extreme job pressure/stress, and managing it better than I managed most ordinary, day-to-day tasks before ketamine. I don’t take this for granted.

I travel for an infusion every 30 days. To make the treatment last for the time in between, without dealing with the cost of off-label nuedexta or the hassle of finding a compound pharmacy to make a generic version of it, I’m currently taking dextromethorphan 15 mg (Robitussin Long-Acting CoughGels sold on Amazon) along with a little bit of Paxil (5 mg) twice each day. Paxil causes me terrible GI upset and does nothing for my depression, so the only reason I take any at all is to help extend the effects of the dextromethorphan, which in turn helps extend the effects of the ketamine.

I’m sharing these details because too many disbelieve that ketamine is a real, long-term option for living with depression. It can be. For me it is.

What does “be positive” mean to you?

Some folks may innocently say “be positive” as a general synonym for “do beneficial things.” But in Western culture, “be positive” has come to have specific implications, including:

  • fake it until you make it
  • look confident at all times, even if this means never trying to learn anything new
  • don’t be angry/unhappy because it might put someone off
  • your inability to consistently visualize a positive outcome might prevent it from happening
  • you deserve unhappiness if you aren’t able to think it away
  • and so on.

I’ve come think that “be positive” is actually a code word for something quite ugly, when you look at what it is doing to young people these days. Everyone has negative feelings and negative experiences. Pressure to pretend that this isn’t true (i.e., that we can have it all if we play the part well enough) is only making people extremely fragile and intolerant.

Truly “being positive” begins with allowing yourself to feel negatively, without needing to hide it or beat yourself up for it. And allowing others in your life to do the same.

Negative emotions are part of existence and resistance too

Some anonymous advice for resistance* that is making the rounds on the internet says: “No more helpless/hopeless talk,” with an insistence on “positivity” that sounds like it is being marketed by the self-help industry.

Expressing helplessness or hopelessness doesn’t make someone a bad person, or bad for the resistance.  It just means they are human, and understandably having negative feelings about very negative circumstances.

It is really not helpful to judge people for their feelings, suggest that they ought to judge themselves for their feelings, or suggest that they need to keep quiet about having such feelings.  Helplessness and hopelessness aren’t things people can just turn off or ‘snap out of’. The worst we can do for someone who is feeling that way is shame them into believing they have to do it alone, in silence.

We don’t need to look/be “positive” while we resist, any more than we need to have nice-looking makeup. If wearing makeup personally helps YOU feel more ready to face the world and get stuff done, then by all means, go for it. But don’t pretend that wearing makeup is a proven effective strategy or a moral imperative for the rest of us!

No, I’m obviously not suggesting that we should strive to say helpless/hopeless things to each other all the time. But clearly you realize that having a totally helpless/hopeless world and a world that judges and forbids all helpless/hopeless talk are not our only two choices?

If someone expresses helplessness/hopelessness to you, whether about the news or something personal, you can help them cope with these feelings by understanding and acknowledging them. (If you also want to suggest ways the person could change to feel better — like focusing on small concrete actions or taking breaks to focus on pleasant activities and relationships – great. But keep in mind that people rarely welcome being told what to do unless the advice is coming from a place of compassion.) Of course if a friend’s helpless/hopeless talk is really too much for you, you need to set limits to protect yourself from that. But if you can, first tell your friend that you’re concerned about the frequency of their helpless/hopeless talk, and maybe bring up the possibility of seeking professional help.

We’re all in this together — even those of us who sometimes feel helpless/hopeless, or angry, or fearful, or otherwise not so “positive”.  Don’t let silly self-help crap decide for you what thoughts/feelings are welcome and acceptable during a national crisis.

*Note that the version of the anonymous advice that I read yesterday had an additional (12th) line saying that we have to be “positive” and not angry/fearful. For the record, I thought the other 10-11 points on the list were good suggestions.

“Positivity”

If I sold you a shiny, sugar-coated pill that I called “positivity,” would you swallow it without considering the risks? Would you ignore the fine print about side effects and dangers — just because the name “positivity” makes it sound like it must be a good thing?  Or would you check what is actually in this pill and make sure there is solid evidence that these ingredients are both effective and safe?

Much of what is being  labeled “positivity” —  such as trying to make yourself think positive thoughts and look happy when you’re not —  is widely accepted by the public as an indisputably good thing when it isn’t.  These things may help some people some of the time, but for many other people they are quite harmful. And in fact, the people most likely to be harmed by forced “positivity” are the ones who are most at risk to suffer from feeling bad about themselves and their lives.

Yes, it makes sense to try to act with more compassion and respect for both yourself and others.  And to remind yourself to notice the good parts of things along with the bad parts. But the package known as “positivity” contains only a little of this, and a lot of other added ingredients, including forced smiling, feeling as if there is something wrong with you if you don’t always have optimistic/confident thoughts, and pressure to compete with others over who looks more positive.

When you say that a goal of yours is to “be positive,”  or when you use “positivity” as a hashtag, ask yourself what the heck you really mean to say. If what you mean by “being positive” is really more a matter of something like “being kind,” (or less judgmental, or less of a perfectionist, or less rigid in your thinking, etc.) why not just say that?  Or are you actually wanting to provide free advertising for quackery being sold to help people compete in a potentially deadly race to nowhere?

Why you shouldn’t distinguish so-called “high functioning mental disorders” from “mental disorders”

I’m seeing a lot of stuff from mental health awareness groups about “High functioning depression,” “High functioning anxiety,” “High functioning ADHD” and you name it. Obviously, just because a person’s work/school performance or social media profile looks alright doesn’t mean they can’t also have a psychiatric diagnosis. But there are far better ways to get this idea across to to the public than by dividing people using made-up labels like “high functioning” that ultimately only worsen confusion and stigma.

There are no separate diagnoses specifying high-functioning vs. low-functioning depression, just like there aren’t separate types of depression for right- vs. left-handed or short vs. tall people. There are just infinitely many different variations of major depressive disorder for the infinitely many people who have it.  There will never be a diagnostic label that captures how your specific combination of symptoms and identity and life all intersect — nor should there be, because that is not what these labels are for.

But adding the words “high-functioning” to a person’s diagnosis is not just unnecessary, it is harmful, because it increases stigma for everyone else. For example, by saying you have “high functioning depression” you’re making sure to specify that you’re not a loser like a stereotypical depressed person, thereby removing any positive effect (on stigma) that publicly proclaiming your diagnosis might have had. It is essentially an attempt to boost your own social appeal by distinguishing yourself from others who are less fortunate. It also functions to buy into and support negative stereotypes. (I wouldn’t refer to myself as having “high functioning depression” any sooner than I’d call myself a “female scientist.”)

I’m afraid that this seems to be part of a trend among young stigma fighters to embrace diagnostic labels while still being unable to accept that mental illness necessarily entails struggling/suffering, and while still holding very negative attitudes towards people with mental illness who don’t meet their standards for being sufficiently successful (attractive, happy-looking, and so on).  But it doesn’t do much good to de-stigmatize diagnostic labels while stigmatizing the real experience of people who live with those diagnoses, many of whom do not have picture-perfect lives.

***

For more on this topic, see this recent writing by Sam Dylan Finch and M. Slade.

Starting over

I’m starting 2017 with a new doctor, not because changing doctors was something I wanted or planned to do, but oddly enough, because of politics. Sure, when looking at ongoing treatment for a chronic illness you have to expect the unexpected — but not usually things like this!

I’ve known for a while that my (former) doctor and I didn’t have the same political opinions — but why should that matter when receiving medical treatment from a caring professional? He had an annoying tendency to talk about Trump before/after my infusions as if this was ordinary small talk, and though that bothered me, I put up with it. Then at our last appointment he started complaining (gloating?) about how many of his liberal patients had been calling him in a crisis soon after the U.S. presidential  election. I can’t swear if he actually used the word “crybaby,” since I was still feeling effects of ketamine, but I am certain that was what he meant.

I knew I couldn’t feel comfortable calling him for help after that, whether or not my depression/anxiety was directly related to election results. If I’m going to be depending on someone to help me with this illness by sticking me with needles and giving me incapacitating drugs, I need to be able to trust that they’ll behave like a caring professional.

So I started looking for another ketamine provider, and I’m lucky that new options have become available since I started this treatment nearly 2 years ago. My new doctor is still very far away from where I live, and the routine is pretty much the same.  I don’t know what this doctor thinks about Trump or liberals and hope they never tell me.

Sincerely,

Sincerity might be both my greatest strength and deepest flaw. My concern with what lies beneath the surface is an aspiration, a compulsion, a phobia, a paranoia. I envy people who don’t care about being sincere, because they’ve got a lot more options. But I’m trapped in being me and can’t do anything about it.