Staying on Meds - Letting Your Psychiatrist Know Who's Boss
Let's resume the conversation. In my last two shareposts, I referred to two individuals here, Sunnday and Erik, caught in the impossible dilemma of living a no-life on their meds or ending up in the hospital off their meds.
"I used to be so alert and able to carry on meaningful conversations with people," Erik wrote. "Why do I have to live my life like a slug, who no longer experiences orgasm?"
"I will not do this forever," Sunnyday wrote.
In support groups, we counsel patience to those new to treatment that putting up with temporary side effects is par for the course, that it takes time for the beneficial effects of meds to kick in, and to bring up any concerns with their psychiatrists.
But Sunnyday and Erik are clearly past that stage. Medical treatment has brought them out of crisis and into a state of conditional stability. But at what price? In Sunnyday's words:
"My life sucks. I have no sex drive, gained almost 100 lbs, my body feels numb all of the time, and I'm more depressed now ..."
The American Psychiatric Association's 2002 Practice Guideline for treating bipolar makes it very clear that psychiatrists are derelict in their duties if they simply give up on their patients at this point. The object of treatment, says the Guideline, is remission, which means "complete return to baseline level of functioning ..."
(A new Guideline is due out very shortly and will undoubtedly convey a similar sentiment.)
Sunnyday and Erik most unambiguously want their lives back, but their meds - which worked so well at getting them out of crisis - are now posing the greatest obstacle to their recovery. What is amazing is that, apparently, their psychiatrists are stupid to this.
Let's bring Veej into the conversation. Commenting on my last sharepost, Veej very neatly articulated the dilemma many of us face as patients:
"I don't want to go back to being a fat, impotent, zombie, but feel like that's my only alternative if the deep depression returns."
Is that the only choice we have? Between unmedicated depression (or mania) and medicated zombie-hood? Is there a middle way? There is no simple answer, but why don't we begin where it all started - when you first sought out your psychiatrist. Maybe it's time to change the dynamics of that relationship ...
Phase One - Letting Your Psychiatrist Know Who's Boss
First step: Get the attention of your psychiatrist. They see hundreds of patients a week for maybe ten minutes at a time and they probably wouldn't recognize you if they ran into you on the street. You cannot have a meaningful working relationship with your psychiatrist if he or she has no idea who you are.
Second step: Thank your psychiatrist. Take my word for it, these guys are worse than patients when it comes to feeling threatened, and you really need to keep the lines of communication open. Tell him or her how grateful you are now that you are stable. That way, he or she will be in a listening mood when you read out the Riot Act.
Third step: In a very calm voice, let it be known that now is the time to focus on your recovery. You have goals in life (a job, a loving relationship, friendships - whatever you deem important). Make sure your psychiatrist acknowledges your hopes and dreams as legitimate. To date, he or she has probably only been concerned with keeping you out of the hospital. But now the deal has changed.
Fourth step: In the same calm voice, commit your psychiatrist to a partnership, to the notion that the two of you are working together to achieve full recovery for you, and that your psychiatrist will do whatever it takes, in accord with your wishes.
Congratulations: Assuming that your psychiatrist has actually been listening, you are now the boss. Your psychiatrist is now working for you. If this is not the case, keep your cool. You will soon be shopping for a more enlightened psychiatrist, one who listens.
Phase Two - Laying Down the Law
First step: In the same calm voice, let it be known that your current meds are an impediment to your recovery. In essence, the same meds cocktail that got you stable is probably not the same meds cocktail that will get you well.
Second step: Press the point - that losing your quality of life (your ability to think and feel and function, plus maintain a state of good physical health) is not a fair trade-off for stability.
Third step: Spell it out in clear English - you are overmedicated. If you are on high doses, you want low doses. If you are on many meds, you want to be on few meds. Getting from A to B to C may not happen overnight, but you are entitled to a reasonable time frame.
Fourth step: Riot Act time. Hold your psychiatrist fully accountable. Make him or her justify every med in your cocktail. This means:
- What part of your illness (or co-occurring condition or related behavior) is the med meant to treat? (Mania? Sleep? Anxiety?)
- What phase of the illness is the med meant to treat? (Getting you out of mania? Keeping you from relapsing into mania?)
- How long are you expected to stay on the med? (For six months? For life?)
- Is there a reasonable alternative to any particular med? (For instance cognitive-behavioral therapy for depression or anxiety or nipping baby manias in the bud?)
- What are the full range of side effects and drug interactions of every medication in your cocktail?
- Are there any serious risks (such as the prospect of an antidepressant flipping a bipolar patient into mania or an antipsychotic causing weight gain or tardive dyskinesia?)
- If you have to put up with side effects, which ones are acceptable to you and for how long? (Hand tremors? Lack of sexual desire for say six months?)
- What experience has your psychiatrist had in working with this particular med? (Has he or she noticed improvement in other patients?)
- What is the known mechanism of the med? (Serotonin-enhancer? Dopamine-blocker?) Even if you have no idea how the med is supposed to work, you need to be satisfied that your doctor knows.
If your psychiatrist fails to answer just one of these questions to your satisfaction, then he or she has no justification in prescribing the med in question. The first principle of medicine is to do no harm. The onus is always on the doctor to explain. Somehow, we got this backward by placing the onus on the patient to comply.
Phase Three - Closing the Deal
Keep in mind, any psychiatrist worth his or her salt values an aggressive patient who stands up for him or herself. This shows the psychiatrist that the patient is willing to negotiate, and then stick to the agreement, and renegotiate when the need arises. These are the patients likely to have good outcomes.
An overly-compliant patient who simply takes their meds without question is probably on the wrong meds in the first place and on too many of them. That same individual, over time, is likely to become frustrated and turn into a non-compliant patient.
Trust me, there is a "middle way" between over-compliance and non-compliance, but the onus is on you - the patient - to make your case. Act as if your life is on the line - it is, you know.
There is a lot more to discuss here, but now is the time to throw the conversation over to you.