A Patient Speaks: I Hate Meds!
“I hate meds!!!” Sunnyday writes. “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 because my doc doesn’t want me to be manic and every time I try a new antidepressant, it hypes me up too much…ugh!!!”
Sunnyday was responding to a recent sharepost by Dr Jerry Kennard, here at BipolarConnect, entitled “Adherence to Medication and Coping with Side Effects.”
Sunnyday had a lot more to say:
“Is this really what life is supposed to be like, fat, unsexy, and depressed all of the time? I’m only 26 for gosh sakes! I will not do this forever. … What’s the point of taking meds to make me feel ‘normal’ when all it does is make me feel worse??”
I hear you loud and clear, Sunnyday. In a recent sharepost I wrote:
No one enjoys being turned into a eunuch. … In short, losing one’s sex drive is not an acceptable side effect. Neither is gaining excess weight, feeling cognitively dull, losing motivation, or anything else that adversely affects one’s quality of life. The whole purpose of meds treatment, after all, is to make us feel better, not worse. …Is this it? the patient wonders. Is this the best I can expect? To be stuck, like this? For the rest of my life?
Let me tell you, Sunnyday, when you wrote, “I will not do this forever,” it really struck home. You are perfectly justified thinking this way, and psychiatry is stupid for not listening. You speak for an awful lot of us, judging from reader input all over this site.
On the issue of meds compliance and meds side effects, there is a huge disconnect between psychiatrists and their patients. In a study published in the May 2003 Journal of Affective Disorders, clinicians reported that they felt their patients quit lithium owing to “missing highs.” The patients who quit cited other reasons.
Psychiatrists are in extreme denial about this. Last year, I presented a grand rounds lecture to a psychiatric hospital in Princeton on the topic of meds compliance.
“Sending a patient out the door with just a prescription is not treatment,” I told them. No sooner had I stopped speaking than they cleared the room faster than if someone had pulled the fire alarm.
The issues are complex, but we are talking about a perfect storm of problem patients, problem meds, and problem clinicians, exacerbated by a healthcare system from hell.
Physician logic is very different from patient logic. Physician logic assumes that patients will willingly fill their prescriptions because they don’t want to go back into crisis. A patient, however, may have rational and irrational fears about taking meds and issues with authority, not to mention cognitive difficulties associated with his or her illness, plus no end of complications. A physician ignores these issues at the patient’s risk, and in this era of 10-minute meds checks an awful lot of ignoring is going on.
Then there are the meds. They are based on technology dating from six and seven decades ago, with no substantial improvements. They are built primarily for crisis situations, with little knowledge on how to apply them over the long term. The one unambiguous finding from the few long-term studies to date show that patients have great difficulty tolerating them.
Sunnyday, you speak to this issue with the wisdom of a true authority.
“Too many ‘good’ doctors do opt out now. They can’t stand practicing bad medicine under the insurance company rules. How terrible is this? We are literally RUNNING the good docs out of insurance company lists because insurance insists that they practice bad medicine!”
I wish I could give you some words of encouragement, Sunnyday, but my guess is you know the reality. Sooner or later you will get frustrated and go off your meds. For a little while, you are likely to feel great. Your energy will return. Your head will clear up. Your sex drive will return. You will start thinking you have a future and planning for one, and you will probably get started on losing your meds-induced excess weight.
Then your illness will kick in and as sure as night follows day, you will find yourself back to square one. One thing about meds - we know they are good at keeping us out of the hospital. That lesson was brought home to me and loud and clear the other day. An acquaintance of mine back east went off her meds and guess what?
So imagine yourself back in the hospital, Sunnyday. You tried to be a good patient. You took your meds and did just what you were told, only to feel worse, a lot worse, struggling, wondering if the entire rest of your life was going to be like this - stuck in a virtual no-life. But your psychiatrist wouldn’t listen, wouldn’t accommodate you, probably didn’t even bother to ask what you wanted out of life.
Chances are your psychiatrist saw you as a diagnosis, with you as an ungrateful patient, rather than a person with hopes and dreams. All he or she cared about was keeping you out of the hospital. Yet, here you are, back in the hospital. And whose fault is it? Who gets blamed?
YOU, Sunnyday. You, the patient. It’s all your fault. You were the one not listening. You obviously don’t have any insight into your illness. You obviously miss your manic highs.
Makes you want to scream, doesn’t it?
Many thanks for commenting, Sunnyday. Your post should be required reading in every medical school and CME course. But that is cold comfort for you right now. Trust me, there are good psychiatrists out there, ones who listen, but the onus is on you to start looking. A good psychiatrist will work with you in finding meds that work for you. You will need to do your own work in applying various recovery strategies.
Trust me, Sunnyday, smart meds strategies combined with smart recovery strategies will give you something - a life - to look forward to, as well as a reason to stay on your meds. In the meantime - permission to scream.
John is an author and advocate for Mental Health. He wrote for HealthCentral as a patient expert for Depression and Bipolar Disorder.