I’m not going to let my disorder define me

We live in a land where no one’s life is free of trauma. When I first came out of the bipolar closet, I was overwhelmed by the support I received. I woke up to messages of solidarity every day.

The response made me hopeful about our future as a country.

So many reached out to me; family members, who I’d least expect to be proud of me for what I did, called me to tell me that they were.

The world became a better place.

Many could truly empathise, not just sympathise. Yet, there were those who lashed out at me, mocked me, or suggested I get locked up. I became an easy target to deflect on, worthy only of mockery.

When I discovered that the writer of an anonymous blog who suggested that I be locked up was actually someone who outwardly supported mental health awareness, I was upset not by what people had to say about me, but about the hypocrisy and hate that flourished.

The tweets calling me a lunatic or a psycho, speculating on everything I’ve ever said by connecting it to my disorder, stereotyping me, reducing me to a statistic, etc. were not as upsetting as the silence around them.

Ableism is no joke. It cripples those who are subjected to it. Being called crazy, psychotic, etc. leaves long term negative effects and certainly silences anyone who fears that label.

Many young people contact me and ask if they should tell others about their disorder. They always receive a firm no.

Not everyone is strong enough.

A handful supported me, tirelessly replying to my attackers about their misconceptions, sending me messages of love and support and I will always be grateful to them. Unfortunately, it seems that the vast majority are happy to condemn ableism in theory, but not in practice.

It’s not enough to just say that making jokes about mental health isn’t acceptable. It’s important to not do the same if you wish to be an ally.

Living in Pakistan, I wouldn’t have written about my mental health issues had I not been ready for the hate that I knew was inevitably coming my way. It was very easy to dismiss it when it came from strangers. But, perhaps I wasn’t ready for the pain of it coming from the ones I love.

Over the years, I’ve had to cut out family members who have used my disability as an excuse to demean, mock or silence me.

One family member is heavily addicted to multiple substances and uses me to deflect from her own issues. Another didn’t like my feminist perspective and that alone was reason to declare me “mad”.

I have not just been verbally and psychologically bullied, I am often seen as a liability if I apply for a job for example, or a scholarship. It feels cruel to be labelled a statistic but I’ve also been very lucky in finding people to work with who don’t stereotype, who aren’t ableists and who don’t see me as my disability.

The vast majority who attack people brave enough to publicly speak about mental health issues are simply deflecting because they don’t want to deal with their own mental health issues. They deeply resent me for not letting my disorder define me.

Hence, I have come to realise that my mockers too, are wounded. Stuck in a rut, they are unable to move past their own pain. How can I feel anything but sympathy for them? I know them intimately. I was one of them.

I have an excellent support system, a very large and loving family who will always be there when I need them, fantastic doctors and therapists, as well as the resources to be able to obtain any help or medication I need. I also have a most precious gift, one that so-called “normal” people often lack: rationality. No one can take that away from me.

To my bullies and haters, to the intolerant, to the bigots:

I have nothing but pity for you because I know history won’t be kind to you. How can I then possibly hold a grudge against ignorance?

In trying to constantly break me, you have unknowingly given me a precious gift and I thank you for it. You have shown me who my true friends are.

I forgive you and I sincerely hope you can heal like I have, free from all your demons.

Written for Dawn.

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Bipolar Manifesto

I’ve been active in bipolar forums and we are too often let down by those who are meant to provide us support and care. We’ve also wondered if our suicidal thoughts are related to our caregivers and often, they are. Here is some advice for support providers and caregivers.

Realise that people don’t kill themselves simply because they were programmed to. Understand that when someone is ready to kill themselves, it is because they feel they have no other option left. They often feel abandoned or alienated or simply tired of being vilified because they make easy targets. People deflect on us too much and it’s easy to repeat cycles of abuse with us.

Also realise that if a family member is mentally unwell, then the chances of others having psychological issues is very high. Bipolar disorder is often genetic and if one family member has been diagnosed with it, the chances of most other family members lying somewhere on the bipolar spectrum is high. Nothing is worse for us than declaring us THE PROBLEM without finding out if you may have a problem.

This should also make you realise that it’s easy to deflect on us instead of looking inward. It is easy to demand only one person makes changes without making changes in your life as well. It is easy to see a problem in others and live in denial of the issues you may have. You are not perfect and you have no right to demand perfection from someone who is already struggling unless you can show them how. Rest assured you won’t be able to because you are human.

Bear in mind that having a genetic history of bipolar disorder does not necessarily translate into eventually getting it. The genetics rely on triggers and families are often the biggest trigger. If you left your child alone with someone who raped or molested them, you created a trigger, not the genes.

Do not hold onto one issue and grudge us for it forever. We make mistakes and are often the first to acknowledge them because we’re taught to do so in therapy. If we are made to feel bad about mistakes in the past that were rectified, then take responsibility for vilifying us. Do not focus on the only the negatives simply because it’s easy to do so. Appreciate the positives repeatedly. Let go of something that may have happened in the past if the behaviour has never repeated itself. If you don’t do so, you will will become a negative reinforcer who will impede progress greatly. You will become an impediment to the path towards healing. You may kill off the motivation to get better.

Understand how you may be repeating cycles of abuse with us. Understand that we are as human as you. You lash out at us, we lash out at someone else if we can’t say anything to you, they complain and you immediately only hold us accountable. This isn’t acceptable to us. We are well aware when you are creating cycles of abuse and to grudge us alone without taking any accountability to yourself isn’t fair. Understand that being treated unfairly can make us unwell. We have as much of a right to dignity as anyone else, diagnosis or not.

If you drink alcohol, think about the many hurtful things you may have said to us while drunk. If you don’t remember them, don’t dismiss us as liars if we express we were hurt by them. Do not make us your targets when you’re drunk. If you are unable to control your abuse and drink, then do not grudge us for wanting to stay away from you.

If you apologise, mean it. Don’t give us an empty apology. Don’t ever apologise and then repeat your mistake. Empty apologies make us feel worse, as if we are not worthy of being apologised to after being wounded.

Make an effort to treat us as equal humans who are as worthy of love, respect and dignity as any others. Do not give us special treatment by being too stern, too enabling, too mean or too negative. We are as human as anyone else. We respond to compassion and kindness more than force just like anyone else. We also need to develop insight and understanding. Healing isn’t possible without it. Do not impede this process; aid it instead.

Do not expect us to do this alone and without support. To do so would display your ignorance towards our condition. Read about it. Go to therapy but don’t ever call our doctors without our consent unless we are suicidal. Do not call our doctors and ask for confidential information. Do not call our doctors and ask for an appointment without getting our consent. Some of us struggle to find good doctors and therapists. It takes a while to build trust. If we feel the trust could possibly be breached, we may stop wanting to go to that particular therapist or doctor. Make sure we are comfortable with it first. Those of us who trust you will not hesitate but if you’ve made too many empty promises or violated our trust too many times, do not grudge us for wanting to protect ourselves. If we hesitate, do not taunt or vilify us for it. Allow us to think it through and respect our decision. Find your own therapist. If we can do it, why can’t you?

Do not judge us for our choice in medication or wanting to manage without them. Some may not want to risk an early death because of liver failure due to taking medications long term. They may want to learn to cope without medications. Do not bully them into taking them unless they want to.

Similarly, do not judge us if we do take medications or pontificate about which ones to take or not. Do not tell us how to feel about the medications we take. We get to decide. You cannot understand the side effects our bodies are enduring. Sometimes the side effects are distressing and horrific such as temporary blindness, perpetual nausea, drowsiness etc. Don’t tell us what to eat, how much to sleep etc. We get to decide because we have to learn to cope. Do not give us your non expert advice and leave that to the doctors.

Do not tell us to explore alternative therapies if we don’t want to. Also, do not impose your coping mechanisms or views on us. Some may take comfort in religion and prayer, some may not. Do not keep telling us prayer will solve our problems. It may comfort us, but it can’t eliminate a disability that has no cure.

Do not obsessively monitor our medications or make judgements on them. Medications are awful, with many side effects. Allow us to choose which ones suit us. Do not tell us which side effects are bearable and which ones we should or shouldn’t endure. We need to learn how to take them ourselves, how to manage on our own just like any other human adults. By monitoring or wanting control, you are creating a dependency which also have negative long term repercussions. One day you won’t be around and we’ll have to cope on our own.

Always remember dependency on medications alone is detrimental to our well being. Never forget that the amount of medications we need to take is necessarily related to stress levels. The more stress we have around us, the more medications we need. This is why most of us can only work part time and many of us may need breaks from work. We value our sleep more than others because sleeping well helps us immensely.

Because some of us can’t work full time or work consistently, do not judge us for not making a lot of money. Many of us have already decided that peace of mind is worth more than wealth. If there’s any group that knows money cannot buy happiness, it is us. It can help pay bills etc, but it can’t bring anyone peace of mind. When we’re commodified and told we’re not worth much financially repeatedly, we may end up connecting it to self worth. We value the self esteem it often takes us years to build. Don’t kill it.

Create a relationship of trust which must be mutual. Your bipolar loved one must feel and believe they can trust you blindly. To ensure this, make sure you don’t make promises you can’t keep, don’t create expectations you know you can’t live up to, and don’t betray our trust. If you do, don’t grudge us for not being able to trust you. It’s only natural.

If you have a negative behaviour such as a nasty tone or are loud, and then tell us off for the same behaviour, then realise you are responsible for the resentment we may feel. It feels hurtful and hypocritical. People who live in a loud house are loud. Soft spoken parents have soft spoken children. We all model behaviour based on our loved ones. If you want to see a change, change it in yourself as well.

Do not provoke or bait us when we’re down simply because taking advantage of our vulnerability is not only downright evil, it has severe long term repercussions. Instead of wanting to reach out when upset, we will end up actively avoiding you if we fear you will not provide support. Don’t ever forget we’re very high risk for suicide and sometimes the slightest trigger may create ideation. If we can’t trust you to treat us with compassion, we will not be able to reach out to you. We will feel hopeless and abandoned. Suffering in silence is as suffocating for us as any other person.

If you’ve helped us during a suicide attempt, always remember your reaction impacts if we’ll reach out to you again or not. If you mocked us or ask us the wrong questions such as why, then realise we would rather allow the attempt to succeed instead of asking for help for fear that being kept alive will mean being subjected to the same behaviour. Too many of us have contemplated suicide because we feel we failed you, let you down, made you miserable. Instead of wanting to live for you, we yearned to die for you to end your pain.

Understand this and apply it because if you don’t, one day, you may find someone you love hanging by their fan or wake up to find a corpse in their bed. You will have no one else to blame but yourself, you will have blood on your hands.

Being Bipolar

From the latest edition of Paper magazine

Growing up, I aspired to be rich, successful and famous. I dreamt of becoming a human rights lawyer who would fight all wrongs against humanity and be lauded for it. I also wanted to be a famous novelist, rich enough to own her own island. Like all children of rich, ambitious parents, I equated financial success with happiness. As an adult, I realised how wrong I was. Currently, I’m not working myself into the ground and as a result, am always blissfully broke. Money comes in, money goes out, but slowly it’ll start to trickle in more. Instead of freaking out about not being able to make any savings at the moment, I remind myself daily, how grateful I am that I’m happy. And that’s what matter, that’s what counts.

At the age of 24, I started to take my mental health issues very seriously. I was always a troubled person so when my doctor confirmed for me that years of depression were a misdiagnosis and that I was really bipolar, it all started to make sense. Weird, too intelligent for my own good with an imagination that had a life of its own, I was always living on two planets at once: this world, where I physically belonged but didn’t love, and my own little planet in my head. I hated this vicious, cruel world and aspired to change it. I didn’t belong but I desperately wanted to. I hated this world so much, that the thought of it ending never upset me. The thought of dying and leaving seemed appealing at times. I’ve kept some of the suicide notes I’ve written over the years to remind myself that even when I’ve hit rock bottom, I’ve managed to pull myself up again. They disturb me but they also comfort me and remind me that I’m a survivor and that is something to be proud of.

But I wouldn’t be here, writing this, and sharing my story had it not been for some major life changes and many years of painful therapy. Had I not changed my life, had I not made the effort to overhaul a major part of who I am and taken all the medications, I am convinced I would have been dead. I do not expect you to understand or even comprehend what it is that I go through, but I’m hoping some insight into my condition will help you develop a sense of empathy towards those of us with invisible disabilities.

At the same time as I was being diagnosed and tested for bipolar disorder, I was working at a bank and was downright miserable. I was only working there to please my family who I had a strained relationship with. I desperately wanted my parents to be as proud of me as they were of their “normal” children so even though I was miserable, crying myself to sleep every night and waking up with a sense of dread, I continued. I hated my job and had extreme ethical issues with much of what I was being asked to do and put up with. Other than the work politics, which I later realised was nothing compared to the education industry, being placed in service and treated like an object was dehumanising and made me incredibly angry. Day after day customers got away with abusing me when they were in a bad mood. Aunties got away with grilling me about my love life and marriage plans. Men stood at my desk and stared at me like a sex object. No matter what I wore, no matter how conservative my clothes, I was ogled, glared at, asked out and felt more like a sex worker than a banker. There was nothing I could do. Whenever I attempted to complain, or told my misogynist boss that I wasn’t happy, he told me to suck it up because the customer is always right. I didn’t like him and as a result, when I did something good and was praised for it, it didn’t feel good. It just felt empty.

In order to cope, I started self medicating with alcohol and partied hard to relieve all the stress that had accumulated over the week. Needless to say I did incredibly stupid things that I later regretted and actually had no control over my impulsive need to drink when in the company of drinkers. I only gave up when given a choice: alcohol or mental health. The medications I was taking wouldn’t work if I continued to drink so reluctantly, grudgingly, I stopped. Luckily, they helped control my impulse so I was easily able to say no. I instantly started to feel better. My unquiet mind, with its constantly racing, distressing thoughts, was at peace. I was able to sleep. The ticks in my head didn’t keep me up and the silence allowed me to focus. It was probably the best decision I ever made even though it lost me many friends.

When I stopped drinking and decided I would sort my issues out, I realised what a toxic circle of friends and relatives I had around me. Instead of being supportive, many judged me for not drinking and partying excessively like they would. Indeed they only wanted validation and my refusal to give it to them strained our relationships. Many would get drunk and abuse me, killing off the tiny bit of self-esteem I had built up. They never apologised and eventually, instead of forgiving them for it over and over again, I simply cut them out and decided I didn’t need such people in my life. If people who claim they are friends choose not to support you and deliberately aggravate you, there is either something wrong with them, or they simply are not worth investing in emotionally.

At the same time, I made a major career change. I started teaching, something I never thought I’d do. I had a degree in women’s studies and didn’t think teaching would be a career choice that made me happy. Yet it did. Even though I never loved the environment or politics, I loved teaching. It was immensely rewarding and made me feel good. It also allowed me to be creative and forced me to remain open minded. Through teaching, I could change the world like I had always wanted to. It also inspired me to start blogging and writing on a regular basis.

Because of teaching, blogging and activism, I also met many wonderful people who I am now proud to call friends. The elite bubble I had earlier associated with slipped away into oblivion and there’s no going back. There’s no going back to a culture that I personally find toxic. Most of the elite I know have a sense of entitlement that makes them supremely unsympathetic to the horrific world around them. I have heard them make statements so callous that they have left me wounded. They judge me based on how much money I’m making and most have told me, to my face, that teaching is noble but not enough. They cannot comprehend that the pursuit for money is not something everyone aspires to and they judge those who don’t. They don’t understand any perspectives other than their own, and as a result, I find that culture toxic and intolerant.

Another form of support in my life other than my doctors and family are many other bipolar people around me. I’ve been active on bipolar forums and support groups for many years now and they have served as an incredible form of strength. Therapy, along with medication, is crucial for recovery but doctors can’t always be available, nor is it feasible to rely on just one doctor alone. Support groups are a form of group therapy and we provide each other with a lot of motivation. We keep each other going through the hard days and we all provide support, without judgement, because we can truly understand unlike those who have never experienced severe mood shifts.

I teach critical thinking and believe in constant self-reflection which most people in this country resist. We don’t admit our wrongs. Instead we point fingers and blame others. I honestly feel we suffer from a collective psychosis and if you have mental health issues, this attitude is dangerous. It is dangerous because the process of recovery and learning to cope in this world necessarily requires self reflection and being forced to confront your mistakes. Unless you can do that, you cannot get better. It’s easy to convince ourselves that we aren’t the problem. I know. I’ve been there. But that state of mind, when one is nothing but just a victim, is counterproductive and doesn’t lead to any healing. Instead it only leads to pain, bitterness and anger.

I turn a blind eye to those who judge me for who I am. Years of teaching, writing and part time activism have made me a thick skinned and strong woman who knows her strengths. I’ve also made the effort to study my illness, to understand it, to do what I need to in order to stay functional and happy such as avoiding all triggers. I decline late nights, no matter what, because unlike others, I need a full eight hours of sleep. Those who love me truly understand and do not mind my absence. Without restful sleep, my day is ruined and there’s a danger I will have an episode.

These days I only work part time. I no longer associate with any schools and quite easily gave up a very prestigious teaching position because it was making me miserable. I now work when I can and when I can’t; I do not have to medicate myself into a stupor just to function. I’ve learnt to value and crave stability over financial gain or societal approval. It honestly doesn’t mean much without happiness. Sadly, I still see so many bipolar people stuck in this vicious trap, miserable and in immense pain. As a success story, I’m hoping this inspires them to become pro active and take their life into their own hands. If I can do it, anyone can.

Download PDF: Being bipolar

Paper’s latest issue is available now & also available on ipad.

Lock up the lazy bloggers?

A few months ago, our social conscience, the greatest most ethical journalists in the world, Cafe Pyala, blatantly lied about me and even after being informed they were incorrect, they didn’t correct their error. I didn’t want it removed at all because I want the world to see just how easily people lie about bipolar people (by assuming the worst in us) simply because we are bipolar. I want this to remain up there forever so that I can convince any manic bipolar person not to come out to the public. Many think writing an article like I did will be a wonderful idea. It’s not. Truth be told, I regret coming out because society isn’t ready. And even those who claim they are sensitive to my disability really aren’t and end up assuming all sorts of things about me based on stereotypes. For example, if I rant or make an angry statement, people end up assuming I’m manic or having some severe rage. I can no longer just be annoyed or amused. Everyone will assume an extreme.

But back to Pyala who can’t even spell my name correctly (it’s Shaikh with an A). Seems rather lazy not to check how I spell it but anyway… Pyala claims I invaded a journalist’s privacy when I did no such thing. The journalist in question had all these details up on line. But in order to mock a bipolar woman, I guess it’s ok to define reading something that’s publicly available to all as “invasion of privacy”. Secondly, no summer plans could possibly get ruined because the profile is very old. Unless Pyala thinks I have a time machine, I cannot possibly ruin someone’s plans that have already occurred.

But that’s not my point. My main point here is that any of us can selectively use tweets to defame anyone. And here are some of Pyala’s tweets to analyze:

Cretin, a word so loaded, so abusive is easily used by Pyala. It mocks the weak, the infirm.

Apparently the very intellectual team is unaware that words like lunatic aren’t ok to use. They are actually unaware that words like lunatic are extremely demeaning to those of us with mental health issues. Yeah, I buy that.

Pyala’s tweets aren’t free of misogyny either.

Ah yes, if a woman’s a presenter, then her appearance is fair game. And if her haircut is bad, it’s because her husband cut it at home because men can’t cut hair and women MUST look good.

I have many more but I’m saving them for a workshop. Moving on to ad hominems:

Maybe because they’re in good company?

And here’s Mr XYZ making a personal attack on another author on facebook. Don’t worry, I’ve protected his identity. I know who the team members are and unlike most Pakistanis, the last thing I want is to get back at them by telling the world who they are (most people already know anyway). Logical deconstruction and the fallacies they constantly provide me are the best revenge.

The Pyala team, just like the rest of us, loves to preach but not act. I’m getting tired of being someone who is always ready to point out flaws but never reflect. I’m tired of Pakistanis being so unhappy in life that the only satisfaction we get is by being nasty and then basking in our own intellectual glory. I want no part of it. And I do, indeed, deeply fear the massive backlash I will face because of this.

Being bipolar in Pakistan

First published in Dawn blog.

I suffer from a disability called bipolar disorder, something that 2.4 per cent of the global population suffers from. For most of us, it is a genetic disease, but there are others who don’t have a family history of it. It manifests itself by making an individual feel extreme highs and lows in cycles. It is also varied in intensity and has two classifications: bipolar I and bipolar II.

Being bipolar in Pakistan is not easy. Mental health disorders in this country are taboos that lead to discrimination which we face increasingly by the day. And because our disability cannot be seen, it is often dismissed as a lie or an excuse not to work. The very same people who imply that it’s possible for us to “snap out of it” would never dream of telling someone in a wheelchair to stop whining and walk.

Day by day, we hide our pain, the obsessive thoughts in our head and make excuses that are lies just so that we are not judged. Some of us don’t disclose this to our employers until we’ve been hired because we know that if we do, we may not be hired at all. More often than not, we never disclose. We pretend to be what we are not and over the years, it takes a huge toll on our well-being.

Can you imagine being in our shoes? Can you imagine a day when you’re so depressed that you’re unable to move, let alone get out of bed to brush your teeth or eat? Can you imagine being able to convince yourself that killing yourself would be the best thing you could do for your own family so that they don’t have to put up with your wretched existence? Can you imagine being so elated that you actually believe jumping off a roof will not harm you at all? Can you imagine being so manic that your totally irrational and incomprehensible thoughts actually make sense to you – Can you possibly imagine it at all unless you’ve been through it? We live in hell, which is why we mostly don’t fear death, perhaps this is why we have the highest suicide rate.

While I cannot speak on behalf of all females who have bipolar disorder, I do believe that we face similar discrimination and challenges. Bipolar patients necessarily need support from their family and friends, but in our culture, most families are not willing to accept that we have a problem. There is a lot of denial because of the huge stigma associated with mental health disorders. Many times, it is important for families to convince a bipolar person to seek help for the one who is suffering is not willing to acknowledge that he/she has a problem.

Because we live in a very superstitious culture where religion is given greater value than medical interventions, too many bipolar people are only diagnosed much later than they should be. People who are mentally unwell are usually taken to shrines. Since there is no visible “illness”, it is also considered a “curse” due to black magic. If someone is suffering from a mental health illness, it is assumed that they are possessed by a jinn.

Psychiatrist Dr Nusrat Rana, who runs the Punjab Institute of Mental Health, has had patients whose arms have been cut off by pirs who were trying to exorcise jinns out of them. She treated a woman whose face was scared by a faith healer with hot tongs when she was hysterical. By going through so much trauma, both physical and emotional, most develop Post Traumatic Stress Disorder which further exacerbates their ordeal.

Others marry off their daughters thinking that marriage will “cure” her, only to see that her bipolar disorder has been exacerbated by childbirth and postpartum depression or mania. If her condition results in a divorce, which is mostly the case, she is further shunned and mistreated. This “shaadi kaara doh” advice is also given by doctors, linking it to conversion disorder, which according to Dr Nusrat Rana, is a new version of hysteria, the archaic “wandering womb” syndrome.

As a teenager, I used to hallucinate and see black giants. Even though my mother belongs to a family that manufactures and sells pharmaceuticals, she was convinced I was seeing jinns. She really thought prayer and rituals would solve my problem but they never did. I know I was hallucinating because all the giants went away once I started taking medications that stabilised my brain chemistry. I no longer see things that are not there, nor do I hear voices like I used to. It’s not my mother’s fault that she believed religion could solve my problem and I do not judge her for it. She is, after all, a product of the society she comes from and has been incredibly supportive over the past few years.

This misconceptions regarding bipolar disorder and horrific stereotypes perpetuated by the media, as well as, people in general make having an unseen disability worse than it should have to be. Nor should it necessarily be seen as a “curse” for it can be a gift. Some of the most creative geniuses had bipolar disorder such as Virginia Woolf.

Stephen Fry openly talks about it and has even made a documentary about what it is like to be bipolar. Studies show connections between bipolar disorder and creativity and many lists of famous bipolar artists, writers etc have been compiled which shows just how much those of us with this “disease” have contributed to the world.

Had it not been for bipolar people, the world would have been a duller place and I keep thinking, perhaps just to console myself, that it surely must have evolved for a good reason.