Guide for Becoming Non-compliant (Unhitching The Chemical Harness)
What Is It?
If there is any area where the views of the many involved
can reach boiling point then it is the juncture where compliance and non-compliance
meet. It seems so simple to say to someone that they must take particular
drugs so they'll feel better and get their illness in "control."
The truth is though that almost every bipolar person will experience and
precipitate some degree of non-compliance at some time during the course
of the illness. The main question that always rears its head is "Why?"
Why do people suddenly or periodically decide to go off their drugs? The
answers are as varied as are the number of individuals declared officially
bipolar. In this section I'll try to make it understandable as to why
non-compliance becomes an issue for both the bipolar person and the people
who make up the social network that surrounds and supports them.
Why Is It A Problem?
It's as much of a problem for those around us as it can
be for us because a certain predictableness seems to go out the window.
The person who stops medication is in for a rough ride in terms of waiting
out the drug "wash-out" period (the time it takes all psychotropics
to actually leave the body's systems). Along with the annoying "wash-out
period" there are recriminations and worries about whether this is
the right thing to do, an essentially unanswerable question until such
time as it answers itself. In the meantime there is fear. Fear that the
choice was an inherently bad one to make; fear that a sudden barrage of
mood shifts will hit and overwhelm; fear that the door to suicidal ideation
has been left unbolted; fear that NO ONE will understand WHY anyone
would deliberately endanger themself in such a manner; and finally, fear
that one may have broken some trusting relationship.
It's as much of a problem for those around
us as it can be for us because a certain predicability seems to go out
the window. The person who stops medication is in for a rough ride in
terms of waiting out the drug "wash-out" period (the time it
takes all psychotropics to actually leave the body's systems). Along with
the annoying "wash-out period" there are recriminations and
worries about whether this is the right thing to do, an essentially unanswerable
question until such time as it answers itself. In the meantime there is
fear: fear that the choice was an inherently bad one to make; fear that
a sudden barrage of mood shifts will hit and overwhelm; fear that the
door to suicidal ideation has been left unbolted; fear that NO ONE will
understand WHY anyone would deliberately endanger theirself in such a
manner; and finally, fear that one may have broken some trusting relationship.
There is the inevitable conflict between those who see
the choice to become non-compliant as intentional recalcitrance and the
bipolar person who must bear the pain, sickness and other problems that
"living through better chemistry" brings to them. Just remember,
if you've been so fortunate as to never have to take a maintenance drug
that makes your hair fall out or your stomach clench in gut-wrenching
pain, you can never understand the full WHY of non-compliance. I'm going
to try to help you non-bipolar folks acquire a better understanding of
your bipolar loved one while offering some useful advice to the bipolar
person whose thinking has brought them to the door of non-compliancy.
Reasons For Why We Become Non-compliant
The word 'compliant' automatically sends red flags to
the forefront for most bipolars because it smacks of a lack of independence
in terms of decision-making. In addition to that unsavoury notion is
the ongoing existential battle between the compliant and non-compliant
'selves.' How can we (bipolar folks) make it understood that sometimes
the benefits of a particular psychotropic drug simply don't outweigh
the loss of 'self' we may feel? Why is that "loss of 'self'"
deemed important to us? And when is a side-effect of medication intolerable?
Who gets to decide, the bipolar person or their carers? The answers
are not simple and they colour every aspect of one's life. In short,
non-compliance has multiple causes and is not subject to the exertion
of pure will as some would like to believe.
Let's first talk about the word 'control' and what it
signifies to the bipolar individual. Yes, we have a condition, illness,
disorder that occasionally or episodically renders us incapable of dealing
with even mundane stressors, but there are few if any bipolar persons
who will choose to relinquish control of their destinies simply because
they are subject to drastic mood-swings. This often makes compliance
a tricky issue. What it always comes down to is whether the pay off
is sufficient to warrant suffering the various side-effects of the many
psychotropic drugs that are used to treat the condition. There simply
is no such thing as a drug without some adverse effects, and some of
these can be life-threatening or disfiguring in extreme cases. Steven's-Johnson
Syndrome, a kind of lethal rash, is one life-threatening side effect
of lamotrigine and EPS symptoms accompany the use of many of the antipsychotics
used to treat bipolar disorder. Along with these more damaging side-effects
are a plethora of more minor, but equally discomfiting side-effects
such as hair loss, diarrhoea, dry mouth, shakes and trembles, eczema
and sexual dysfunctionality.
There's another very sad reason for why we sometimes
become non-compliant and this one is a crime and injustice that every
advanced society guilty of marginalising people should bear. Psychotropic
medicines can be very, very expensive and with insurance being so high
and the lack of an adequate social safety net in communities, many poor
bipolars simply must quit their drugs for lack of funds to pay for them.
This is an issue of social justice…the society guilty of placing people
in this position is ALSO guilty of human rights violations and committing
grave social injustice. I wish I could say I've never seen this be the
case, but the truth is…it's so common it's ludicrous.
Clearly then, there are a multitude of understandable
reasons for non-compliance and most are well-founded. But, the how,
what and why of non-compliance is a uniquely individual thing. The side-effect
that results in non-compliance on the one hand for one individual may
be ignored completely by another, so there simply are no hard and fast
rules. Why is this so?
The answer, while not easy, is not impossible either.
Because bipolar folks are highly individual both in terms of the severity
of the bipolar disorder and in the individual tolerance for specific
side-effects, it is never possible to make a guess as to who or whom
will become non-compliant at some point down the treatment trail. However,
there are some signposts to look for as well as strategies for remaining
compliant as long as the bipolar person views compliance in a favourable
light. And, if your bipolar loved one decides to quit their drugs, then
make sure they've a copy of this guide in their hands so that the possibility
of disaster is greatly ameliorated.
Some bipolar sufferers will give up drugs simply because
they find them too difficult to keep track of. This results in doses
missed and/or doubled up, thus resulting in some additional side effects
and inefficacy in general. Since it is easy enough to purchase the daily
pill holders at any chemist/pharmacy, this reason to stop taking drugs
seems somewhat incomprehensible to me. However, it's about the only
reason that seems so…most bipolar folks want desperately to be stable
and productive and suffer almost anything to remain so if they ever
achieve that state.
Perhaps the most incomprehensible reason to quit medications
suddenly is because you have some twisted notion of getting even with
someone else in your life. I've heard this reason offered more than
a few times and it is pathetic. If you have such incredible anger toward
someone close to you that you’d stop taking your medication just to
spite them then find a good therapist or friend and deal with it, because
of all of the more ignorant and stupid reasons for non-compliancy this
one takes the flipping cake!
So, if you are entertaining some negative thoughts that
you think might absolve you of your responsibility in this choice I'm
here to tell you that you, and only you, ARE responsible. What is written
here will provide a better way of doing things than making excuses and
playing the whiney "poor me" tune for all and sundry.
Guide For Becoming Non-compliant (Unhitching the Chemical Harness)
Have A Plan:
First thing you need to do is to think this choice through
very carefully. While the ultimate choice is yours, the implications
go well beyond your own personal sphere. There are others in your world,
and now is a good time to give their needs fair consideration. Make
a plan and follow it. Too many of us embark on non-compliance by throwing
our hands up in the air and acting rashly as though there simply is
no choice about how to reasonably proceed. Let it be said now that there
are better and worse ways of deciding to quit your medications and throwing
a hissy fit or blaming others is NOT the way to go. Remember this if
nothing else: What you choose to do and whatever follows from your choice
in terms of consequences, is YOUR responsibility. So, right now, decide
why it is you wish to end your drug regimen. Is it because of the nasty
side effects? Is it because you miss the highs and creativity? Is it
because you no longer can afford them? Is it because you've forgotten
what the "real" you feels like? These are all reasons that
fit in the understandable category; I've heard them offered many times
when med compliancy is at issue. That said, let's see what a good plan
for drug non-compliancy looks like.
Take It Easy!
How much of an issue is expediency for you at this time?
Are the drugs making you terribly ill? Have you made sure your psychiatrist
knows the medications aren't working well for you? Can you specify exactly
what the problems you are having are? Try writing the reasons for quitting
down and then decide if any of them are fixable reasons. Think hard
and long on this part before arbitrarily quitting your medications.
There is time aplenty to begin the quitting process; after all, you've
been taking these drugs for how long now? In any case, unless you are
being made truly ill by the particular medication, then take your time
in thinking this move through. It is never, ever wise to quit your medications
abruptly. Almost all psychotropic drugs require a very gradual "ramping"
down process whereby the potential withdrawal effects can be avoided
or greatly lessened. Ramping down simply means the dosage is lowered
ever so slowly over a substantial length of time so as to allow your
body and brain time to acclimate to life without a particular drug.
Tell your doctor
The significance of this step should be self-evident
to any bipolar person. You wouldn't jump from an airplane without a
parachute and you shouldn't jump into non-compliancy without your psychiatrist
knowing you're going to try to go it alone without meds. Many psychiatrists,
while not keen on the idea, will still be there for you if you enlist
their help before making the big jump to no meds. Let them know what
you are up to and why. This is a time for total honesty; don't shirk
your responsibility to your doctor; let him/her know your intentions
and why you have them. It is very likely you'll need their help in the
future so don't burn your bridges behind you…that would be a very bad
move to make.
Tell Your Friends:
There are two very good reasons for telling your friends
about your intention to go off your meds:
- It will make your resolve concrete
If you are feeling hesitant about telling your friends or your doctor
about your intentions, then that is a very good sign that you haven't
thought through your choice sufficiently. Take some more time to
think about what you hope to accomplish and make those hopes concrete
by then telling your support network about them.
- Friends can be your greatest support
Should things become unclear to you during a manic or depressive
episode that might follow your decision to dump your drugs, your
friends are your safety net. They can be a mirror for how you are
doing and are thus invaluable.
Tell Your Family:
Yes, you simply MUST tell your close family members
even if it means you'll get an earful of negative feedback. Have the
courage of your on well-thought out convictions and be straight forward
and honest with your loved ones. They most likely will not be supportive
of your decision; this is to be expected, but then, they don't walk
that classic mile in your shoes do they? Still, they must be aware of
what your plans are as they are the ones most likely to be affected
by your choice should things go a bit wonky and you go off the rails.
You owe your family members this much…don't fail to give them the honest
scoop on things.
Join A Support List or Group:
The bipolar who is contemplating throwing their meds
down the toilet really must become a member of some kind of support
group, whether online or in real life. You'd be amazed at how quickly
an online group can tell when a member is off their drugs and beginning
to have a problem and the same is true of offline support, if it's regular.
The great thing about online support is that if you are a regular participant
people get to know you in your various moods and you can speak with
them daily as opposed to only once a week or monthly. Please consider
joining one of our online support groups. FyrenIyce has two such groups
which are identical and have approximately 340 members at this time.
Want to subscribe now? Then please go to the list subscription page
and FAQ at www.iinet.net.au/~factal/fsublist.htm
Keep A Journal or A Mood Chart:
I know you are probably thinking that keeping a journal
or a mood chart is just too much work, but it is truly worth the effort.
I can send you an excel spreadsheet that I use during times of ill health
or you can find one on the DMDA (Depressive and Manic-Depressive Association)
website. If that doesn't suit you then make up your own or at least
make daily notes in a small notebook about how you are doing mood-wise.
Life as a BP is about patterns and learning to recognise them in order
to stay as well as possible. When the same pattern emerges again and
again as a warning sign of an impending bad episode, then you've good
solid information about what steps to take next. Ask yourself how serious
the mood or behaviour is on a scale of 1 to 10 or use the Fieve
scale. If a week full of 30's or 40’s on the Fieve indicates
a depressive spiral then take quick measure to counter the fall. You
may find it takes only the rescheduling of a stressful appointment,
a lessening of social engagements, some private time to yourself, or
any of a number of other steps you can use to prevent the spiralling
out of control into the depths of despair, or the heights of mania.
I cannot emphasise this tool's worth enough...learn to use it for good
Compliant Again (or Back In Harness)
Saying When Again:
I've talked about knowing when to say when elsewhere
on the website (www.iinet.net.au/~fractal1/grief.htm), but that was
for us first-timers, or so you thought. Now it's time to look at "saying
when" in a much different situation i.e., the one you find yourself
in now. Suppose that going off your drugs went smoothly enough and you
did all of the things I urged you to do earlier in this piece. Now suppose
that things have gone from ok to worse and the future is looking just
a tad bit shaky at the moment, or maybe it looks terrifying and ominous
even. If so, it's time to say that good old 'when' word again. Time
to give up the experiment and step back into harness for the time being.
This is sad? Yes, but better sad than dead don't you think? Say "when"
when you need to. Reach out and talk to your therapist, doctor, family
and friends and don't be thinking you are some kind of failure for not
being able to carry on med-less. You are NOT a failure in the least.
You will fail yourself terribly if you try to stumble on with foolish
pride intact and failing to get the help you need to get back on track.
Some bipolars go long periods of time without their medications and
you may well be one of these folks, but when it's time for some psychotropic
help, then just do it! (as the Nike ad says). Go back to the drugs forever
or just for so long as you need them, but if go back you must, then
do so with your head held high and no "I'm sorries."
It takes a strong person to go it alone and med-less,
and if it didn't turn out to be the best choice, you need make no apologies
for having tried. But if you refuse to get the help you need you may
do untold damage to yourself and others you care about and for that
you are indeed responsible. There's no shame in saying "I tried,"
but there are bucket loads of tears in saying, "I won't say when!"
Say "when" when it is time to do so; you won't regret it half
so much as you'll regret its alternative.
Grief and Sadness Again:
Remember the 5
Stages of Bipolar Grief from elsewhere in the site? Good,
because you are probably going to go through them in a slightly different
manner again. You've lost the "no meds" battle and are back
on the drugs, but you are angry, relieved, sad, and just dissatisfied
with the whole mess. That's ok. It's ok to feel the way you do because
you've learned a great deal by what you've done. The challenge is to
remember the lessons and to take them with you as you continue on the
path to reasonably good health. Allow yourself the release of mourning
for being back on the meds. Write down your entire experience for the
next time you decide to take the plunge into med-free space again, and
you are likely to try it again; most of us do. It's ok to be so sad
at the fact that you're not "normal" in the typical sense,
just remember, you are special in many other important ways. It's ok
to mourn yet again for the lost you and times gone by. Take your time
and get through it…this too shall pass.
Lot's of stuff has changed. You may be on entirely
new drugs because the old quit working or failed to work again as they
once did. You've learned how to be responsibly non-compliant and seen
how it works. You may have learned some new and vitally important coping
skills and hopefully, because you did things the rightest way you could,
you've gained some respect from those around you. Some of what you've
learned will not be known for awhile, but as time goes by, you'll see
those patterns of change I told you about and you'll be so much better
at seeing when an episode is heading your way and how to best deal with
it. There are methods of self-help throughout this website so please
read and learn where you can strengthen your coping skills and how.
The Never-ending Road:
On the road again with meds in hand…but this time you
are stronger and wiser. You've learned from your non-compliance stint
whether it seems that way or not. You may have learned to say "when"
sooner, thus preventing a major episode of illness; you've learned to
make people close to you your partners and not your enemies in the face
of this illness; you've learned to expect little or more depending on
life's situations and your own reactions to events. So much you've learned
will not be evident until some time passes so give yourself that time
to see just how much you really have learned. On the other hand, if
you are doing well off your medications, then hat's off to ya and go
for it! Just remain vigilant as time goes by because we both know how
insidious this enemy we share can be. If you find yourself self-medicating
with various substances then beware, for the warning flags and lights
are waving and flashing a message to examine where you're at with this
Next Time (Is There A Next Time?)
Yes, most likely there will be one or several more "next
times" depending on your personality profile and the illness itself.
Just remember this little guide and try your best to do non-compliance
the smart way and hopefully each effort will teach you much about how
your body deals with bipolar disorder. Sometimes it only takes one try
for many of us to accept that psychotropic drugs are going to be a mainstay
in our lives…but not always. I'll be the first to admit that I have a
lot of wishes, and being med-free is one of them, but I know that wishes
aren't wings and that if I fly, I fly without a net. So…remember how to
fly smart if you choose to go "netless." We'll be here waiting
for you to return to the nest safely.