In belated honor of World Mental Health Day, I thought I would begin with the National Alliance on Mental Illness (NAMI). As a parent, I’m supposed to like NAMI, right? It’s a grassroots organization “dedicated to improving the lives of individuals and families affected by mental illness.”
A stroll through the schizophrenia section of the NAMI website is a downer. NAMI is hardwired into promoting medications, while I assume that many of the people it supposedly represents and who are following NAMI’s advice aren’t that hot on them. The NAMI website even has an “Ask the Psychiatric Pharmacist” section. The answers found there in the FAQs freely admit that some of the drugs are addictive, they have unpleasant to life-threatening side effects, and yes, there are long term consequences to using these drugs. At the same time, the pharmacist goes on to reassure us that taking the meds somehow offers protection to the brain cells from becoming damaged due to mental illness. The “client” is treated like an idiot, who has no real clue what is in his or her own best interests.
I am dumbfounded that NAMI would dismiss the real health consequences of these drugs for those of their clients who are the front lines here, but of course, I shouldn’t be. NAMI is more of a relatives’ organization than a users’ organization. I know of many people who are suffering the consequences of looking after their rocky relatives and NAMI gives them what they want – the ability to convince themselves and their relatives that they are better on the drugs than off them. It all makes sense until you end up with a relative who is on the meds, grossly overweight, perhaps diabetic, but still psychotic. NAMI dismisses the side effects and the psychosis by emphasizing that people just need to find the right medication. It’s a vicious circle. There will always be a drug in the NAMI pipeline of advice. After all, NAMI supports the latest research, which is heavily weighted in favor of meds because that’s the only research that is considered authoritative. There is no research money in people’s actual experiences. To NAMI, schizophrenia is a biochemical disorder and that is all it is.
Many people say that NAMI helps them to cope better with an admittedly difficult situation. I understand and empathize because we all need to find ways to cope with a very scary, bewildering situation. My objection to NAMI is that I don’t want either me or Chris just coping, I want to move beyond that to cure. But the NAMI website doesn’t hold out that prospect. Coping is the best it’s ever going to be in NAMI’s view of things, especially when it comes to schizophrenia.
To NAMI recovery is all about coping – group living, structured programs, continuing of course with the medications, professionals (not you) taking charge of your life. The professionals can also be of service to monitor your meds. When NAMI talks about helping you to do your grocery shopping and to manage your money in pursuit of what it calls the prospect of a higher level of functioning (only the prospect of this low standard, may I point out), it makes me wonder whether the brain cells are actually being protected by the meds NAMI so strongly endorses. I see my son at the age of forty out grocery shopping in his bathrobe, drooling and disheveled, with a caring professional showing him what money looks like.
Coping is all you are going to manage to do if you take NAMI’s advice on the meds. It does not recommend getting off medications for schizophrenia. The NAMI website won’t even acknowledge that many people have done so and are doing just fine, thank you very much. The NAMI website is an exercise in scare tactics. It hasn’t pointed out, as a grassroots organization should, that nobody wants to be on meds if they can help it. Many people don’t want the meds and would actually like help getting off them and finding other strategies to deal with their problems. Doing so might put the individual outside the realm of just coping. NAMI would find this probably too radical a concept.
I don’t and I won’t envision that bleak future for Chris As a caring relative I can do my part to make sure he is not merely “functioning”, but thriving. I have more confidence in the holistic approach than I have in what NAMI offers.