Mental illness, medication, and the spiralling cost of being well

The occasional debate about non-neurotypicality/madness/mental illness and autonomy/non-forced medication compliance pops up in the little slice of the blogosphere I have time to pay attention to. Often, it's very detached and academic. The people who have not personally been through the psychiatric system, or who have only had to dip a toe or two into it, tend to argue with extremes: either the psychotic mental patient who is a danger to themselves and others, or the victim of the psychiatric system who is tied to a bench and jabbed full of god-knows-what by men in white jackets. Even those of us who have spent year after exhausting year navigating that system tend to fall into the trap of utilising these extremes, when our own perspectives and experience fail to win anyone over.

Those who argue against patient autonomy, in my experience, fit into two camps: those who don't realise that that is what they're actually doing when they argue against the right of a person with mental illness to refuse medication and treatment, and those who quite simply think that people with mental illness have sacrificed their right to autonomy through illness (and as often tacked to the end, "through no fault of their own"). Whilst both of these camps can include people who have either experienced some degree of mental illness themselves or who have seen loved ones battle with internal demons, it is those to whom these debates are purely theoretical who are the targets of this post.

I realise that at first glance, the issue of whether or not people with serious mental illness should "be able" to reject medication can seem like a bit of a no brainer. The medication makes you better, right? Mental illness is a pile of no fun, that can seriously fuck you up or even kill you, right? And no one wants to see a loved one go through the hell that mental illness can be, or the multitude of spin-off horrors that it can prompt. But even for those of us who are compliant, who have had good luck with medication and who choose to continue taking it, there can be spiralling costs that can seem to outweigh the benefits. For some, those costs may simply be greater than what they perceive the benefits to be, particularly if they have not found "the right" medication for them... or if it doesn't exist.

But! I've gotten sidetracked. I didn't start this post to lecture anyone, or to crack open arguments that have been closed. I started it to show you something.



Apologies for the shitty camera phone photo

That's a day in the life of medication, hexy-wise. Some of them I take in the morning, some at night, some throughout the day. The pile is actually a fair bit smaller than it's been at various other times, as I no longer need to take a mood stabiliser. (A shame, they're purple and really would have jazzed up the pic)

So, what's in the daily cocktail for hexy?

The little blue one? The contraceptive pill. Not really all that significant to this discussion, although one of it's many purposes is controlling the PMS-related mood triggers that can destabilise me monthly.

The green capsule? My latest antidepressant. "Latest" may seem an odd word to use there, but I'll give you a little history.

I've been on almost every SSRI on the Australian market, and a few non-SSRI antidepressants. Some have worked, some haven't. Those that worked, I've tended to grow immune to in a short time, necessitating withdrawal from them and starting again on a new and untested one. Thus far, the list looks something like this:

Zoloft: On it for six months. Might as well have been popping tic tacs. No effect, symptoms continued to escalate whilst taking the drug.
Avanza: Minimal effects. Dosage increased to maximum, then I was taken off it. Symptoms continued to escalate whilst taking the drug.
Effexor: This one worked for about a year. However, my tolerance to it escalated astronomically, requiring a dosage increase every four weeks until I was eventually taking the maximum dose. I then had to come off it... and can assure everyone that Effexor's dreadful reputation as the most horrible antidepressant to withdraw from is well deserved. It also made me jittery and clenchy, and I was more prone to manic episodes whilst on it.
Cipramil: Took a total of one pill. It sent me into a two-day long psychotic episode so severe that no one could get near enough to sedate me. Didn't bother trying a second dose.
Aropax: Worked briefly, but I was needing to increase my dose every four weeks. It also made me jittery and clenchy to the point where I ended up with aching muscles. Weaned off it after less than a year.
Edronax: Increased aggression to dangerous levels. I actually yelled at the children of some random woman in the supermarket. I nearly punched a woman in a bottle-o for the great crime of walking past me, and vomited from pure rage once. My pshrink didn't argue when I said I needed to stop taking it.
Luvox: Ah, Luvox. A SNRI. The closest I have to a success story. It controlled my depressive symptoms for nigh on four years, with a few dosage increases. Unfortunately, this year my brain finally figured out how to get around it, requiring me to abruptly withdraw from it and go on to the one I'm on now. I was in a pretty bad stated during the withdrawal, requiring time off work and some vigilant people around me.
Cymbalta: Current medication. Not yet at completely functional dose, but certainly doing something. Time will tell. I'm hopeful, as it's also an SNRI.

That might be all of them. I suspect there's a couple more, but my memory has failed me. Most of those medications within four years, though? With the associated side effects, withdrawal periods, and periods of completely uncontrolled depression when they didn't work, or when I had to come off them, or when I was waiting (and praying, and trying to hold on) for a new one to kick in and start doing its thing? Not a great deal of fun, and not exactly high-functioning hexy.

The thing is, this is not exactly an unusual experience for someone with severe depression, particularly when it's part of a complex diagnosis. The four years of being unable to work or take care of myself because nothing was working, the unmanageable side effects ranging from real, physical pain to periods of screaming-at-the-sky level crazy to mania and psychosis, the odds of the medication making my symptoms worse, the brief spots of relief punctuated by the news that my brain had "done that thing again!" and that I'd have to go through drug withdrawal whilst being monitored as a high-risk suicide threat? That's all part and parcel of what "taking your medication" can mean when talking about psychiatric medicine and mental illness.

Moving on. The two big matching white ones are my antipsychotic. In one sense, I'm extremely lucky: the first antipsychotic I was trialled on began to work, and has worked ever since. I've been on it for seven years now. The dosage has been adjusted up, then down, then up again, then down again, and will probably need to go up and down a few more times in future. That medication is the one that plays the biggest role in keeping me functional. It controls my schizoid symptoms quite well, excepting when I'm sent into a schizoid state by a manic or depressive episode. It makes me sleep, which is vital to me functioning comfortably AND to me participating in a world set up around schedules and business hours. It's got a bad side, though. It slows down my thinking, squashes my creativity, and prevents me from playing music or engaging with mathematics the way I used to. It's also caused me some physical problems, and those problems are my biggest argument against mandatory medication.

You see those other pills, that I haven't mentioned yet? The little yellow oval one, the little round white one, and the three medium sized white ones? Those are all medications I take to deal with permanent and potentially debilitating side effects and secondary conditions produced by my antipsychotic. They are all to treat serious conditions that I only have because of that compliance, because I've been dutifully taking my crazy-meds every day for the last seven years.

The little yellow one was the first to be added. It's to treat the reflux I now have to deal with. Taking medication every night for five years (at the time it was prescribed) had damaged the sphincter at the top of my stomach and increased the acidity of my stomach itself. The pain when the reflux flared up was indescribable. It sounds silly to say that for someone so common and simple as reflux, but it is honestly the greatest pain I can remember enduring. I would end up curled up in the foetal position, clutching at my swollen abdomen, bawling my eyes out, and completely unable to tell why I was hurting. Until the docs figured it out, I was forced to limit my food intake to those few, bland foods that didn't set it off... and then even those stopped working. Still, it's fairly simple: as long as I keep taking the pills, my stomach behaves itself aside from the occasional flareup. That's a model I'm already used to.

The three white ones were added recently. They're diaformin, which is a treatment for insulin resistance and type 2 diabetes. These do run in one side of my family, but no-one in my family can remember anyone ever developing diabetes before the age of fifty. Type 2 diabetes, though, is a common long term side effect of my antipsychotic. Thanks to taking that drug, and needing to continue to take it, I now have insulin resistance, and am lining up to deal with full blown diabetes far earlier than I should have to worry about it. The insulin resistance made me gain a lot of weight, and has changed my weight distribution to the point where my body is an entirely different shape to what I'm used to. Vanity aside, this has ramifications for my work. It has also increased the concentration difficulties I already have, and that are already exacerbated by the medications themselves. It means that I can't eat high-carb meals, ever, because I pass out immediately after eating them. I've had to leave parties because I've been literally about to fall asleep at the table after eating a burrito, or some yum cha. On top of all that, it increased my depressive symptoms, something that's extremely dangerous for someone with my diagnosis.

That leaves the little white one. That's the newest, added a little over a month ago, and the jury is still out on whether it needs to be joined by another little white pill. It's a synthetic thyroid hormone, and it's been added because over the past year, my antipsychotic has succeeded in causing hypothyroidism. It's stopping my thyroid gland from doing what it's supposed to do. This is adding to the weight gain, lethargy and cognitive issues, as well as contributing to depression. My hair has thinned, and my capacity to handle being cold has diminished. I don't know yet if the dosage needs to be increased to reach an effective level, but I'm yet to notice any change other than a slightly increased heart rate.

I will be on these three additional medications, and possibly the same antipsychotic, for the rest of my life. It's only been seven years, and I'm already dealing with a fairly heavy batch of "long term" side effects. I can't even begin to speculate about what state my body is going to be in after fifteen years on the drug, or twenty.

It's also worth noting that, significantly for people with disabilities, none of these medications are free. I'm lucky enough to live in Australia, and while the PBS isn't perfect, it does mean that I don't pay more than $38 for any of my medications. However, $38 per medication, per month, does add up, and each additional medication I need to add stretches my budget a little further. I'm up to six. The diabetic drug and the stomach angst drug are slightly cheaper than the others, but they also don't last a full month. I'm shelling out over $200 a month on medication, and I don't earn enough for that to not be an issue. Yes, it's cheaper if you're on a disability or sickness payment (between $4 and $8 a prescription) but believe me when I say that the provisos put in place by Centrelink for those benefits are fucking difficult to stick to when you're struggling with mental illness. Especially if you don't have a friend, spouse, carer or family member helping out.

On top of my medication costs, I now have regular massive dental bills to pay... and that is not covered by Medicare. How is the dentist relevant? Well, despite having excellent teeth that never even needed a filling until I was 19, they've been rotting out of my head in recent years. My antipsychotic reduces my saliva production, and it turns out that saliva is pretty important in keeping teeth healthy, functional, and not full of holes.

That's just a small sample of the issues inherent to the idea that people with mental illness should "just take their meds", or be medicated against their wishes. Psychiatric medications have improved a lot in recent years, but they're still hit and miss... and a lot of them are still as blunt as a brick in a sock. "Just take your meds" often translates into "just take that medication every day for the rest of your life, despite the massively unpleasant side effects, some of which will drastically shorten your life expectancy and require medication themselves. And that's AFTER you jump through all the hoops to find a medication that actually does something for you? Oh, and did we mention this is coming out of your paycheck? Aren't you glad you got functional enough to take that low-paying job?"

I still choose to take the medication. Many, many people with mental illness, whose allotment of extra shit is equal to or bigger than mine, do so. I've met people who can't work because they can't stop the uncontrollable drooling brought on by their antipsychotics, but who still take the antipsychotic. I've met people who, like me, have lost even the remnants of their old talents and the way they used to think... but who still take the medication. Significantly, I've met people who will declare themselves to no longer need the medication when they are manic or mad, but whose sober and rational assessment is that they do. These people often have their own procedures put in place to help them stay on the meds.

For many of us, the only encouragement we need to go through this particular hell and watch the side effects and negative consequences stack up is the promise that just maybe, these pills will stop us going through the far worse hells our brains can produce.

For others, though... sometimes the decision to opt out of the medication game is a sensible, rational and informed decision. Sometimes the benefits of the medication simply don't outweigh the costs.