I am reading a book called, "Surviving Schizophrenia; a Manual for Families, Consumers, and Practitioners." I am somewhat surprised that it is also "For Consumers" because the things it discusses can be really upsetting. But I am not sorry that I have gotten it because it has also helped me to understand some things about myself and my illness. For example, I learned that about 50% of patients lack "insight" and the other half do not. What that means is that some understand and recognize that they are ill and the others do not. I'm not positive which side of that coin I fall on...both are true at times. I think probably I am one of those who do have insight but at times am blinded by psychosis and at times blinded by "wellness"....and both of those times are recipes for my deciding not to take my medication anymore.
The author, E. Fuller Torrey, MD, talks about the main reasons why schizophrenics refuse to take their medication and I really can identify with most, if not all, of the reasons. I hate anything that I depend upon or am told that I MUST do or take. I guess that is my rebellious and prideful flesh rising up, but it really angers me that I have to take it...and a lot of the time, I really don't think I need to. Dr. Torrey talks about how some people may view going off it as an exciting or risk-taking act, similar to driving too fast. I can understand that as well...I often ask myself, "What really would happen if I go off of it??" and it's almost tempting to throw caution to the winds and stop it.
Another MAJOR reason for noncompliance in me and in many is the saide effect of weight gain. For many many years I have had the eating disorder of anorexia...and now I have an anorexic's brain trapped in a fat body. This causes immense and indescribable agony for me and I know that a lot of the reason that I am overweight is due to both that medicine and also to steroids which I must periodically take heavy doses of for weeks on end (due to asthma). Another side effect, almost equally distressing is sexual in nature...and that does not add any points to the popularity of the medicine.
Many people also begin to believe that they do not take medicine because they are sick, but that instead, it is the medicine MAKING them sick... I have also experienced many thoughts along those lines. Side effects, (which used to be MUCH worse with the older neuoroleptic medication) only contribute to this thinking. Side effects such as a horrible restlessness called "akasthesia" are intolerable if they are not treated seriously by the doctor. I've literally paced holes in the carpeting at times due to this reaction... You cannot sit or rest or sleep with that problem. Now it is reduced to an annoying tendency to bounce my knees or to shake my foot when I am sitting, but it would really be nice to be rid of it altogether.
Another problem I've had in taking my medicine is that I often have difficulty in feeling connected with my body or with my emotions. Some of this may be caused by depression when the Bipolar aspect of my illness is in an unbalanced state, but I think that the medication really deadens my ability to enjoy things or to respond to them appropriately.
There have also been times when I was fearful that the medication was being used to poison or harm me. I felt that it is a method that my family or the nurses and doctors in hospitals are using to control me and to keep me "manageable" and subdued. I have also felt that it was a means by which they could have access to my thoughts and know what I was thinking.
Right now my husband dispenses my medication to me twice a day and watches me take it....I HATE this; I feel that it is demeaning and I most of all hate that the option of refusing is lost to me. Added to that is the knowledge that if I were to refuse again to take my medicine, he would probably follow the advice of the social workers and doctors at the hospital, and take me to a state hospital and leave me there. This is not some paranoid idea...it is based on true conversations that my husband has had with medical personnel and the decisions he has had to make in the past year. A very basic reason that this is so distressing is that I feel that I have been robbed of some essential freedom; "The Right Not to take Medication"!! My husband says, "you have the right to refuse, and I have the right to decide to leave you somewhere" (not in those words, but you get the general idea!)
But there are times when I am glad that he deals with all of that. I am on four medications for psychopharmacological reasons. ...and on numerous other ones. My memory holds information less reliably than a sieve holds water, so I would probably go weeks on end without remembering it...and then take it three or four times in a day, having forgotten that I'd already taken it. So maybe it's "better him than me." But I still have days when I really really struggle with this issue. It is very important for the patient or "consumer" to have a doctor who listens to them and treats them with respect and kindness...otherwise that doctor just gets added to the list of people who are trying to manipulate and control the person with the illness (in their eyes.)
I have written this to give you a little insight into what goes on in the mind of a schizophrenic and why for them, taking their medicine is not "Just like a diabetic taking insulin" as I've been told hundreds of times. That analogy really has no similarity at all to my (our) situation and I do not feel that it is helpful. It may help those people who think that schizophrenia is a form of demon possession or the result of an unloving mother, but it doesn't help me.