The below piece was written by Steven Morgan in an email exchange that took place on one of my email lists. I thought it was a beautiful well thought out email and asked Steven if I could publish it here. It is slightly edited to allow for it to make sense in this context, links have been added and names removed to respect privacy. I did the editing. Steven’s website on recovery is here. Thank you Steven!
This is the edited email:
I am glad to see the back and forth statements of belief concerning the medication issues and the chemical imbalance issue. I do, however, think that we must be willing to step into new territory with our discourse and not just resort to “You believe what you want” and “I’ll believe what I want”. I think it is necessary for us to be informed in these matters because:
1. Many of us work with others to whom we relay our conclusions, which can obviously impact their recovery.
2. Many of us do a pretty good job of self-stigmatizing ourselves because of the medical messages we have received.
First, I would like to address a comment that one of our members made: “Hate to say it, but I think a lot of the people who have that successful schizophrenia, never had schizophrenia at all.”
I feel that this is a very stigmatizing and dangerous line of thinking. It goes: “Well, schizophrenia is a lifelong chronic illness, so if you get through it COMPLETELY, then you must have never had it.” Pat Deegan referred to this stigma in her own life…that doctors tell her that she must have been misdiagnosed, that surely someone with schizophrenia couldn’t have a PhD and go through periods of time without meds. Well, she was hospitalized 9 times in her life, and her story quite accurately portrays that she exhibited the lump of behaviors deemed “schizophrenia”. Mary Ellen Copeland does not take medications…are we going to say that she must not have been manic-depressive? How about Dan Fisher with the National Empowerment Center who was hospitalized for 6 months for a diagnosis of schizophrenia? He doesn’t take meds either and says he is fully recovered. Dan has written something about this topic. I think it’s worth reading. Here’s the link.
Second, every bit of research ever shows that there is a substantial portion of people – sometimes 40% – who do not benefit from medications. Yet at mental health agencies EVERYONE is on meds. This doesn’t fit the research. There are many people out there who are suffering because of the sedative, metabolic, and “personal stigma” side effects of medications, when research shows that they would be better off without medications. Certainly some people experience enormous benefits from medications, but many others don’t, and we have to start thinking outside the box if we truly want to partner with them in healing.
Third, many research studies show that people DO recover entirely from things like schizophrenia, and some without meds at all. Go here to read a quick summary of some of these studies.
Fourth, we as people with psychiatric diagnoses have to really come to terms with this medication issue. The fact is, some of us don’t take meds and we are okay without them. We have found other tools that have worked for us just as well or better, and we utilize those tools. Many of us would also say that we have experienced profounds shifts in consciousness as a result of our psychiatric experiences, but that those shifts provide us with a new way of existing in the world.
Fifth, there is a horrible stigma out there towards people who choose to go off of meds. For one, we usually can’t find any doctor to actually help us, so we have to go other sources (which may actually be a plus). We are told that our chemical imbalances will come back, that if we feel better then it’s just because we are entering “mania” or “psychosis” again, etc. We are frowned upon by others working in the mental health world, by doctors, by advertisements, and most painfully, by peers. We don’t get insurance coverage for alternatives that may actually help us and we are virtually isolated from mental health services that see our decisions as ill-informed.
Finally, we live with the very real fear that we may not make it, not a fear just from our past experience, but mainly from all of the misinformation deeply rooted into ourselves that we are in fact ill and always will be. Coming off of meds is not just a medical decision; it’s a decision to see yourself in a different light. And that might be the hardest part of all, to actually realize that maybe you’re not as sick as you were led to believe…
There are peers who have great passion for the work that they do. But I have concerns about some of the things some of those people say. For instance, someone said that they were sharing information with peers with whom they work from the bipolarcentral.com site that was posted earlier. That information is flawed and definitely biased. It essentially gives every reason why people should keep taking their medications, and much of the info is wrong. So, my concern is that it is biased. Are you also telling peers that there are people who do recover without medications, and that there are people who use meds for awhile but then stop when they don’t feel they need them anymore? Are you telling peers that you will help them access the same level of information if they choose to come off of their meds?
My original challenge is simple: find one scientific journal article ever that actually proves that a chemical imbalance has been found. You won’t find it because it doesn’t exist.
THERE IS NO WAY TO MEASURE NEUROTRANSMITTERS IN A PERSON’S BRAIN. Therefore, there is no way to actually measure an “imbalance.”