A book of light to end the brain fog!

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I have discovered something about writing. It has whims and fancies of its own. When you are in the practice of writing most days, the words flow easily, your thinking does not falter and sentences form fast,fluent and effortless. But when you have stopped for a while, for reasons beyond your control, it acts like a spoilt tantrum throwing brat. You have to really scratch your brain about that particular flash of inspiration which occurred yesterday, right in the middle of a busy opd, which evaporated miraculously like the whiff of an agarbatti smoke. It is as if your writing has gone into a huff, for not giving it enough time!

This is the state I found myself in last month. A month of busy, busy work days, the responsibilities that go with being an exam mother (by which I mean revising with your kid, subjects which you tried hard to avoid studying into adulthood), trying to teach my younger one to read by herself and the general business of keeping house – all of which allowed absolutely no vigour or brain space to open my laptop.

At the end of the day, the only energy I had was enough to flip the pages on my kindle, and so, that’s what I did. I read some amazing books- those that made me happy, sad, upset and in awe of things they spoke about.

The oneswhichhad adirect impact were Em and the Big Hoom by Jerry Pinto and the Book of Light.

On a day to day basis, I see a range of emotions (from anger to over protectiveness) shown by the relatives of my patients. Some are shocked to realize that their relatives are mentally ill, some refuse to acknowledge it and some firmly believe that their son or daughter is showing symptoms to cop out of some responsibility. When I am talking to the family about the actual nature of the illness which their closest of kin are suffering from, I usually discuss it with the adults, and the children are generally playing around in my consulting room. I surprisingly realized that I have never ever discussed the illness from the child’s point of view. A vibrant impressionable mind, which is in confusion about why their favorite adult is behaving somewhat differently and unpredictably from the rest.

Which is why I found Em and the Big Hoom a very interesting read. How would a child feel, when a parent is mentally ill? When the caretaking becomes a child’s responsibility instead of the other way round. When it is difficult to expect your parent to attend your school functions or pta meetings for the fear that he/she may do something embarrassing.

The story revolves around the author’s family whose the mother suffers from bipolar disorder.  The book is written from a child’s point of view, and tries to address the concerns which are unique to such families. Have they inherited the illness? Will they become mentally ill like their parent? Or will it skip a generation and affect their children? Or are they, at the other end of the spectrum,  accepting the adults as they are and ignoring the quirks?

Going through the book, gave me insight about a huge chunk of responsibility I was ignoring! As for many other mental health professionals, though time is tight, I promised myself that I would spend some time for these children henceforth.

Going on, I read another book, written on the same lines. The Book of Light, which is a collection of stories written by the relatives of the mentally ill about their experiences in life. There are very few books written about mental illness in the Indian context, and hence this book gives an idea as to how the people from different sections of society deal with the illness and the adjustments that go along with it.

If anything, I felt the need to do more, work harder. Not only to help those who are overtly ill, but also those who are silently suffering on the side.Or confused. Or slowly slipping into an illness themselves.

Only if there were more than twenty four hours in a day! (and no math exams!)

 

 

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Are we treating the right person??

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Doctor Diaries….

Each department of medicine has its own challenges. If it is long tedious hours in emergency medicine, the unexpectedness in surgery or obstetrics, or the sense of futility which sometimes goes with oncology, I feel that in general, doctors have these “times” where you really start to wonder whether you are doing the right thing!

There are many such unique challenges which belong to the realm of psychiatry, when as a consultant, you feel as if you are bound by some invisible shackles which prevent you from doing the best for your patient.

Mental illhealth has always been considered with suspicion, even by some of the most intelligent brains in the world, mainly because of its slippery definitions. Also because of the fact that there are no diagnostic tests which can surely classify a patient as mentally ill. Other than the obviously aggressive or flagrantly abnormal patient, most times,  we need to tease out the the history from many of their kith and kin to arrive at a diagnosis by circumstantial evidence aka Sherlock Holmes!

And when we do so, many a times, we end up realizing that we may be, cut that, we ARE trying to treat the wrong person!

Let me elucidate…

Take the case of a woman who has been referred because of a near lethal attempt at deliberate self harm( which is just a fancy name for attempted suicide). The woman, on enquiry, confesses that she is tired of her life, and one of the main cause is the unnecessary amount of suspicion which the husband has developed, in part because of his alcohol habit. He does not allow her to talk with her friends, has made her give up the job she loved and beats her up when intoxicated. Her maternal family, expectedly tells her that she has to “adjust”. So here she is.

Take another example of a child who is sullen, angry and puts zero efforts into his study. The father who is a teacher explains that his son is so ‘dumb’ that he needs to be spanked everyday before he sits down to do his homework. He also explains that he gets so frustrated with his son that, on occasion, he has branded him with a hot iron for his follies. The son was diagnosed to be having learning disability.

In another case, the son who has been a patient of childhood schizophrenia gently chides his mother, who has accompanied him, not to interrupt me multiple times before I complete even one sentence of what I say. “Calm down, Ma” he says and looks at me resignedly. He has probably experienced this phenomena all his childhood, and I can pity him, for I am already exhausted by her!

Such situations are tricky.

If I go on the offensive and tell the relative that he or she is the one who actually needs help, they may dissappear with the patient and never turn up again! Such are the follies of a stubborn ego. Intent on proving the other person wrong and unconsiously expecting some praise for an apparent  sacrifice which has largely gone unappreciated.In the process, I lose out on helping a person who genuinely needs the help which I am qualified to give. Granted it may not completely cure him, but atleast I can lend a much needed listening ear and psychological balm.

On the contrary,when  I  go with the version given by the relative, and reach for my prescription pad, immediately, I see a look of betrayal in my patient’s eye. “Et tu, doc” it seems to say, “I knew no one would understand”. I feel so uncomfortable when I see this look. As though I have let him down badly.

So what we do is, to talk to both of them separately; tell both of them that we understand their point of view, and other’s mistake; and promise to help as much as we can! Sounds devious?? It does,but it also is the most honest answer, according to me.

It works quite a few times, mainly because, as  people, we have real fragile egos. If someone tells us outright,that we are wrong, we suddenly become extra defensive .It takes gentle prodding and many sessions of talking for them to grudgingly accept the fact that they may have played a part in making their dear one sick! Then, we have struck gold! They are amneable to suggestion, and if necessary, medication.And slowly we begin to see a steady improvement in the patient’s condition.

But, ever so often, this does not happen. Despite subtle suggestions, followed by obvious ones, some refuse to change. And sometimes become worse, for they miscontrue that the patient has complained about them. And the patient’s eyes steadily lose their lustre.

I know that we are human, and we can only win some and etc. etc., but each time I write out a presciption for a patient who is so, because of someone else, I still cringe a little at the unfairness of it all.

Why are we treating the wrong person???

Have any of you encountered such situations?

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Can we get some respect, please?

Philippe Pinel removing physical restraints from a mentally ill woman in La Salpêtrière,France
Philippe Pinel removing physical restraints from a mentally ill woman in La Salpêtrière,France

There are a few illnesses in the world which resemble Voldemort! They exist but cannot be named or accepted. And mental illnesses top this list.Both the patient, as well as relatives, seem to be in a state of denial. In my practice,I have seen a range of behaviors which constitute this stigma. People sitting in front of me, suddenly getting a call on their cell phones, hurriedly pick it up and coolly proceed to tell the caller that they are in a cinema hall or market while making pleading faces at me; patients requesting to be seen urgently because they spotted a fellow villager entering the neurology section of the hospital (which makes him a patient with a respectable illness); or a mother who gets the child to the clinic without informing the father or grandparents!

The word  stigma, apparently originated in Greece. In Greek society, stizein was a mark placed on slaves to identify their position in the social structure and to indicate that they were of less value. The modern derivative, stigma, is therefore a distinguishing mark of social disgrace attached to patients in order to  identify and to devalue them. Stigma occurs in two different ways. One, wherein the general public, family and friends of the particular patient happen to discriminate the patient, and two, where due to this discrimination the patient himself begins to demotivate and hate himself.

There are box full of myths all over the place about the cause, nature as well as cure of mental illnesses. Hence, patients are feared for their potential violent nature, lack of will power and apparent genetic heritability of the illness. Stigma in any form is obviously painful and causes a lot of stress and loss of confidence in the person, but the amount of stigma faced by women having mental illnesses is really demoralizing.

I had a 25 year old girl, recently married who had had a relapse of psychotic illness(in which she behaved abnormally, got angry, aggressive and tried to assault the mother in law). This girl was our patient for the past two years and was completely stable with medication. Some time ago,the mother cautiously broached the topic of whether they could get her married. As is the custom, I took time to explain to her that it would be better that the prospective groom come for a counseling session; that he be in the knowhow of her illness and how it was quite harmless; that I would try and dispel myths which he may be having. If he did not agree, then it would ok.  She could get married to someone understands her illness and still accepts her!

When this was discussed within the family, it was met with strong opposition. The family felt that telling anyone would spell doom, not only for the girl, but for her younger sisters who were also of marriageable age. Hence, the mother carefully un wrapped the medicines from the wrapper, made different boxes and hid it in the girl’s clothing so that she could consume it as stealthily as possible. Unfortunately, post marriage, the girl discovered that the wardrobe given to her was in a landing where anyone could walk in any time, and hence started missing doses to avoid being discovered. This led to a relapse, the groom’s side discovering the tablets and blaming the girls’s side for cheating them.

Now they were sitting in front of me, the sulky husband, the fire brand mother in law to one side, the teary girl in the middle and the defensive mother of the bride to the other! And to take the matter to its logical conclusion, there were about 10 panchayat members who had tagged along!

The boy was unwilling to take her back, the Mom in law said, “If they lied about this, there may be other things too”. The mother who had spent heavily on the wedding, alongside a fat dowry, was livid.“Well, she was fine in our house. It is your fault she is this way. And if you want us to take the girl back, you may as well pay us back all the dowry and expenses of the marriage”. The panchayat members were cajoling, “Think about the girl. Who else will marry her? You have to give her a life. Take her back. She will listen to whatever you say and live like your servant!”(Well, this was supposed to be in support of the girl!)

In between all this, the girl was sitting eyes downcast and teary. It made me feel so low and depressed to imagine how she was facing this. She was unwanted by her own family, a burden which was now someone else’s responsibility. Otherwise, she would have to be kept at home and taken care of unto death. The husband, understandably felt cheated, but looked willing, if not for the mother in law who was already making plans for his second marriage and a second dowry! The panchayat felt that the deed had been done and it was now the girl’s fate to suffer at the hands of a spineless husband, and a tyrant mom in law!

This does not happen to be an individual instance. Whenever men develop a mental illness, we find the parents almost magically find brides for them who are willing to “adjust” to being with a husband suffering from an illness or disability. We have seen instances of husbands convincing wives (who are mentally ill) to agree to their second marriages, wives taking domestic abuse of aggressive, alcoholic  husbands with resignation and accept their husband’s infidelity with a pinch of salt. All the while feeling that either their children, or parents or the husband may feel bad if they desert them!

Parents of young girls are devasted when they hear of their child or relative having a mental illness. They take great pains to hide it from near and dear with the fear that they may spread word and spoil her future marriage prospects. All thoughts of education, job etc etc just fly out the window, and the only question that looms large is whether their daughter will get a good husband. Immediately, she becomes a second class citizen.

But reverse the picture, men seem to think that it is impossible to adjust with anything other than perfect. The minute their wives are diagnosed with a mental illness, there are barbed comments, outright disgust and a permission to insult their spouses any which way they please. Everything becomes their fault.I may be over generalizing here, but the ratio of men and families being nice and supportive to women suffering from mental illness is impossibly skewed in the wrong direction.

And the women themselves, in between suffering from an illness that shakes their very core, have to deal with a hostile world. No wonder, many of them relapse repeatedly.

Spreading awareness about mental illnesses, bringing up our girls to develop a sense of self worth, teaching them to fight back and not take crap( I mean, if the husband does accept the girl back, how could she live with him knowing that he did not even stand up to her??) may be over simplified solutions to a very complex problem. We have a long way to go. And a lot of awareness to spread. And a lot of confidence to build. Till then, there are thousands of those who suffer indignity in silence.

Indian woman mourns death of her relative killed in tsunami in Cuddalore