This Saturday I went to meet members of Roshni, the ACMI initiative. It was a mixed group of victims and care givers. As we started the session I realized that the notes I had made were not going to be very helpful.

These were real people and there was nothing new that I could have told them. A tragedy has befallen their lives and they come here to share their experiences. We must draw on those experiences, process them, strip them of presumptions, and make nuggets of knowledge that maybe other care givers can use. We did that by starting a conversation. For example,

1. When users feel the medication is not working we have to take into account that the pharmaceutical psychiatry industry is growing the fastest in the world today but they still do not have effective ways to find new drugs. There is no easy co-relation between chemicals and effectiveness because the results are not tied to figures. All they have are some subjective type tests and the users’ word, which also depends upon the mood of those who are trying the trial drugs.
2. Regular medication also has very hard side-effects. Most often we get angry with a victim for being lazy, but it might be that the medication that he or she is consuming is causing the blood sugar to rise and it is not as someone was saying ‘opium is mixed in drugs’.
3. The discipline of psychiatry has still not evolved enough for the practitioners to be able to make effective and absolute diagnoses. To reach a consensus that the same condition is called the same name by different people in different contexts. That is why it is important that the care givers make the effort to participate in the process of diagnoses and care.
4. Genetics plays an important role in transmitting the illnesses between generations in a family but it can again not be tied to exact percentages. Neither can we rule out the environment or individual behaviour patterns. Genes also work on the basis of whether they are active or dormant or repressive and so on.

We ended up with the question what is it that exactly happens in the mind of a victim. We had with us a lady who has successfully combated her schizophrenia. She said, ‘A strong iron door is locked on the mind. Whatever happens, washes over the person whose mind is locked. We do not have the right keys to open the locks. While the world grows around us, we live in the closed room.’

A very important point to consider, and this was the first time I heard it from a user. Thank you lady.

Tags: Care Givers, drugs, Mental Illness, psychiatry