I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.
Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication. Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?
One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.
I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.
We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.
These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?
Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?
How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?
The problem with loved ones is if you are medicated, you have to deal with side effects and they don’t. If you become noncompliant, they have to deal with your renewed symptoms. So, from their POV, medication, no matter the side effects, is the better option.
[Redacted by Post Author] ~OYD
I see your point, Personal failure, and do try to understand your PoV, because as a partner and parent I imagine someday I may have to try to come at similar situations myself. The problem with this PoV, to me personally, is that I think it erases the person who actually has to deal with the side effects, and their quality of life if they choose not to take meds at all. Sure, they might be more difficult for a family member to deal with, but that family member is not the one who has to personally risk some of the more severe side effects of those medications.
Even looking further into that, that family member will not have to take care of that person if they become remarkably ill from a severe side effect, such as one listed by Crazy Mermaid in the linked post.
Ouyang Dan said, in reply to Personal failure:
The problem with this PoV, to me personally, is that I think it erases the person who actually has to deal with the side effects, and their quality of life if they choose not to take meds at all.
And that seems like a microcosm of the overall systemic problem of being disabled: the fact that society treats our personal choices as ‘let yourself suffer or let your family/society suffer: one or the other’ – and we are expected to always and automatically put up with harm/suffering to ourselves to prevent than harm/suffering to those around us, because our suffering is inherently considered less meaningful or problematic than that of able people or society at large. The impacts to different parties of things like compliance or non-compliance with meds are not seen as equal….
Though I hasten to say that I don’t want to lumber people’s individual families unduly with blame for systemic issues: I’ve been on both sides of the having-depression/having-a-loved-one-with-depression thing, so I never want to suggest that it’s not difficult or complicated. I just feel like there is a huge tendency on society’s part to say not, “Let’s re-examine doctor/patient relationships with regard to non-compliance” or “Let’s find ways to provide additional support for families in which someone has a mental health condition” but “Let’s put all the responsibility for EVERYONE’S experience on the already embattled shoulders of someone whose condition and medication are both making their life extremely difficult.”…
I haven’t had such bad side effects from my meds but it’s still sometimes a tough choice about taking them. And I’m not always sure why. Sometimes it’s the internalized social stigma of being on meds at all, even though I know I’m going to be sorry eventually if I stay off them.
But it’s still very, very frustrating to me when my friends ask me if I’m taking them or tell me to take them. I’m really not sure why I react so badly to that, either. I know they’re looking out for me and want the best for me, and that they’ve seen what happens when I go off them and think I’m OK and I’m really not.
Oddly enough my dad, who is the one who would have to deal with it if I went into the hospital again, never asks me “Are you taking your meds?” or tells me what to do about medication. And that’s actually a huge relief, even though part of me thinks it might be better for me if he did.
I’ve had this before though not with a med for mental illness. The med made me feel as bad or worse than my condition did and it didn’t seem to work anyway (though considering the first, how could I ever tell?). Even it it “worked”, the drug itself didn’t work very well in general. Besides this, it was an injection and there got to be side-effects both immediate and disgusting along with severe localized pain afterward. The illness had hit so suddenly, though, and there was so much pressure from my family for me to take this drug. They’d call, asking if I had. For a while, I would even though there was so much trouble. I’d cry and be sick, get a fever, ache, hurt, everything… Eventually, I started lying because no matter how I tried to say there was so much trouble, my family was never satisfied, never thought it was reasonable for me to stop the drug. And when it finally became evident I wasn’t taking it, certain family members snubbed me, yelled at me, even… that in the time that the enormity of my illness was just striking me, when the shock was over and the depression and mourning set in. Honestly, I didn’t feel it so much. It would have been nice to have been comforted, but nothing much mattered to me at that point. I decided as I did because I absolutely couldn’t stand what the medicine did to me. When another one was available to me, I snagged it eagerly. People thought I was anti-medicine but I wasn’t, I wasn’t at all… I just couldn’t take that kind. I wish my family would have been more understanding and I wish the doc had understood, but I couldn’t have done otherwise. Sometimes that’s how you make the “choices”, you just do what you have to do and accept the consequences (because the consequences of the other side are unbearable). I caught a breath by, well, essentially falling apart, breaking down for a while. Falling apart can be ok once in a while if you can manage to get yourself back together again later. I think so, anyway.
I caught a breath by, well, essentially falling apart, breaking down for a while. Falling apart can be ok once in a while if you can manage to get yourself back together again later.
I like this. It makes a lot of sense to me, actually. I think sometimes we need to, if we can handle it. I think sometimes the effort of “holding ourselves together” all the time, especially if we are doing it for everyone but ourselves, is so straining on our energy.