Muslims with Obsessive Compulsive Disorder

Written by Nicola Shebaily; last updated 28/1/2015

What is OCD?

First off, OCD is not what you see in movies and TV shows, so take a moment now to delete all the OCD references from these sources from your mind. I'll wait...

Okay, so what is OCD really? OCD is a complex and serious illness. It has been traditionally referred to as a mental illness, but recent research has led some experts to push for OCD to be reclassified as neurological. OCD has no cure. However, a person can learn to manage it better. It is very important to understand that OCD is not caused by Jinn, black magic, or poor faith. It is also not a punishment for the sufferer, or their parents, having committed sins.

OCD is not the mere obsessions that everyone has. You're a neat-freak, or strongly prefer things a certain way? Sorry, that's not OCD, so please do those of us who really have OCD a favour and stop referring to OCD in these cases. It is very hurtful because it diminishes an illness that can consume every moment of your life to the mundane, and even something to be lightly thrown around as a joke. Would you say, jokingly or not, that you have cancer if you do not? I highly doubt it.

OCD involves either obsessions, compulsions, or a combination of the two. Obsessions in the case of OCD are different to what the same word refers to in regular use. In OCD 'obsessions' refers to obtrusive and offensive thoughts or images. Obsessions tend to focus around subjects that a person finds offensive or distressing. For example, a very religious person may get blasphemous thoughts or images, or a modest person may get immodest thoughts or images. People with OCD generally know these thoughts and images are often irrational (in very rare severe cases a sufferer of OCD may also develop psychosis, and may believe the thoughts or images are true), and would never actually do or believe what the thoughts suggest. Compulsions refers to actions or rituals, either physical or mental, that are performed as a means to try and relieve the anxiety caused by the obsessions. There is often no logical connection between the compulsion and the obsession. If you would like to understand a bit more about what it means to have OCD skip to the bottom of the page and read a personal experience of a young Muslim woman with OCD.

The seriousness of OCD can be summed up in one man's experience. George (his name has been changed for privacy purposes) was dying from cancer, and had suffered with OCD for over 30 years. When he was asked if he could choose one of his illnesses to be miraculously cured he said he would choose OCD without a moment's hesitation. This man died several months later. May Allah (swt) forgive him and grant him Jannah.

What Causes OCD?

Researchers are still researching this, but they have made some important discoveries. It appears that there are real biological changes or differences in the brain that can make a person susceptible to OCD, but not everyone who has a susceptibility will develop it. These differences affect both the affective and executive parts of the brain at the structural and network levels. One important difference can best be explained with a simple example of the concern of whether the door is locked. In most people this concern is sent to a processing centre of the brain where it will be auctioned either by you remembering that you locked it, thus dismissing the concern, or by checking once that the door is locked. In people with the brain differences often found in those with OCD the message is sent and processed in the same manner, but the message bounces back. So, even after you have processed the concern and checked the door is locked the message of concern continues to be sent to the receiver again and again, causing you to action it repeatedly by checking the door is locked repeatedly. Then the distress builds as you realise that you cannot resolve the issue to the satisfaction of your brain. This is how compulsions arise - the person attempts to find an alternative means of stopping the signal from bouncing back and forth when the usual way we deal with worries fails to work properly. If you would like to read some of the latest research papers please contact Disabled Muslims Australia, and we will send you some links to articles.

Some Common Aspects of Muslim Life that Often Cause Difficulties for People with OCD

Trigger Warning. The following section discusses the most commonly problematic aspects of Muslim life for OCD sufferers. This may trigger some sufferers of OCD. Please do not read on when you are in a vulnerable state, or feel you may be at risk of being triggered. If you need someone to talk to please call Lifeline on 13 11 14. If you are under 25 years old call Kids Help Line on 1800 55 1800, free from any landline (including public telephones). If you are experiencing a mental illness emergency please call 000.

Important Note

Please note that whilst some tips are provided herein they should not take precedence over receiving proper treatment and management through a psychologist. You can learn to manage your OCD better, and should be able to do many things that your OCD previously prevented you from doing. Absolute avoidance to satisfy your OCD is not helpful to its long term management.

Wudu

Wudu can ignite considerable distress due to two factors - the act of becoming clean, and the public nature of wudu facilities. The second matter is something you can work around. If you are able to make wudu at home before praying or travelling to the mosque then you should do so. If you are unable to make wudu, or unable to maintain it for the journey to the mosque, and the duration of the prayer, then you may make tayammum.

Physical touch

Physical touch can be very distressing to people with OCD. The most common issue underlying this disturbance is germs/uncleanliness. Physical touch is surprisingly common in mosques, and during gatherings with Muslim family or friends. During prayers people often stand with their feet touching the feet of those standing next to them. This can be particularly distressing due to the unclean nature of feet. This is more common during crowded prayers. If you are praying with friends or family there is likely to be more space, so this is unlikely to occur. However, if it does occur explain that touching your neighbour's foot causes you distress, and makes you lose your focus on your salah. If you do not feel comfortable speaking with them, or they fail to understand your needs try positioning yourself to the edge of the group, where you have control over the distance between yourself and your neighbours. If you are praying in the mosque try to find a mosque that isn't crowded, and go during quieter times. Position yourself at the back where it is quieter, and at a far edge, so you have greater control over the distance between yourself and others. Greetings amongst Muslims, particularly those with Middle Eastern, Asian or African heritage, often involve kissing, embracing and hand clasping/shaking. This is a difficult issue to manage. If you feel comfortable it is best to explain to your family and friends that you know they are clean people, but that your OCD goes against your logic, causing you to become extremely anxious about touching others even though you know that it is safe to do so.

Salah

Salah can pose a very significant challenge for people with OCD for three prime reasons: intrusive thoughts and images making it impossible to focus, removing of shoes, and touching the head and hands to the floor.

Allah (swt) is all aware, and knows the intrusive thoughts or images you are subject to. Allah (swt) is the most wise, and does not expect you to do something that is impossible for you. A person who is performing Salah and consciously allows his mind to wander is a completely different matter to a person with OCD being distracted by intrusive thoughts they have no control over. Your reward is based on your intention and effort. You will receive greater reward for performing salah when it is difficult for you than someone for whom salah is easier. Just imagine how proud Allah (swt) must be that you did not give up praying when it was difficult for you. There is no reason you should feel guilty or that you have less faith. OCD is not a choice anyone would make. The fact that you maintain your faith as a Muslim in spite of your OCD shows just how strong your faith is.

Removing the shoes before entering the mosque or praying can be difficult for people with OCD either because of cleanliness or other issues with putting shoes on/taking them off. Shoes can also act as a barrier to dirt or germs on the floor. Some people with OCD can also be distressed by wearing socks. If you are unable to wear socks, and cannot go barefoot then Allah (swt) is aware of this, and does not expect you to do what is not reasonably possible. However, in order to avoid walking dirt into the mosque it is preferable to bring spare shoes that are only for indoor use if possible. It may help to explain your difficulty to the Imam and request for a talk to be given during Jummah to educate people about OCD, so you are not bothered by those who are ignorant. If you would like help with explaining OCD to your Imam please get in contact with Disabled Muslims Australia. We can do this for you.

The distress involved in the act of touching the head and hands to the floor is due to the unclean nature of the floor. This can be relatively easily managed by using your own prayer mat, and keeping it clean. If you are travelling to the mosque or prayer room the best idea would be to purchase a prayer mat made of light and thin synthetic materials, such as nylon. These mats have the added benefit of being easy to clean, and not retaining dust and germs as carpet or other cloth does.

Touching Common Property

Touching common property such as Qurans, taps, and prayer mats used by others can be very distressing for some people with OCD. The most common reason for this is anxiety regarding contamination with germs transferred by others who have come into contact with the object. This can be remedied for easily portable objects by bringing your own with you. However, this is not possible for all objects, such as taps. It may help to wear gloves. Some people like cloth gloves, but others prefer latex gloves due to their impermeability.

People with OCD are not stupid or lacking in intelligence. In fact, many studies have shown that people with OCD tend to have above average intelligence. Some researchers believe there may be a link between high intelligence and OCD, but this has not been proven as yet. Some notable examples are Albert Einstein (physicist speculated to have OCD), and Charles Darwin (biologist speculated to have OCD).
People with OCD are not dangerous. They are no more likely to hurt others than anyone without OCD.
People with OCD can get married, and can raise happy and healthy children.
People with OCD can be highly successful people. There are even several famous notable people who have OCD including Howard Hughes (aviator, engineer, industrialist, film producer, director), Donald Trump (business executive, entrepreneur, television and radio personality and author), Harrison Ford (actor), Ludwig Van Beethoven (composer and musician speculated to have OCD), Michelangelo (artist), David Beckham (footballer), and many more.
Each person's experience with OCD is very different, and suffers cannot be compared to each other.

So, how do I manage my OCD?

OCD can be a serious and complex mental illness. You should not attempt to self-treat. You should seek the expertise of a good psychologist, and possibly a psychiatrist (depending on your case). Whilst counsellors, family, friends, and religious leaders can play an important supportive role they do not have the knowledge or training to manage OCD, and may recommend methods that could actually make you worse, or put you in danger.

There are some basic tips I have learnt from my years of managing very severe OCD.

Remember that whilst you cannot prevent the thoughts and images from popping into your head you do have a choice of how much attention to pay to them. Imagine your mind like a river, with the thoughts and images floating towards you. You can choose to jump in and grab hold of them, or you can choose to watch them flow by, and resist the urge to pay attention to them. The more you practice this, the greater your control will become. It is just like when there is loud noise when you are trying to sleep. You can't stop the noise, but you can choose how much you focus on it. The more you focus on that noise the more it disturbs you, but if you distract yourself the noise fades into the background, and you remain calmer.

Do not tell yourself to just not think about it. This is completely counterproductive. If you tell yourself not to think about something then you automatically can't get it out of your mind. Tell yourself now to stop thinking of pink elephants. Just try it. Did you start thinking of pink elephants? Please tell your friends and family that whilst you understand they mean well telling you to simply not think about it does not help, and actually tends to increase our distress.

Distraction, distraction, distraction. I don't think this needs explanation. Your attention towards something is diminished if you try to do something else at the same time. However, please speak with your psychologist to discuss which distractions would be suitable for you. Many of us fall into the trap of distractions being compulsions.

A Personal Story of a Young Muslim with OCD

This is a story of my own experience with OCD. Please keep in mind that mine was a very rare severe and complex case of OCD. As a participant in a study of sufferers of OCD through a major Australian University I was informed by the researcher that mine was the most severe case she had seen. Most people with OCD would have a milder experience, and would not experience psychosis. This actually makes me glad because I would never wish for anyone to have to endure the torture I have. My OCD showed its early signs in my very young childhood. I would spend hours putting coloured pencils in specific colour groups, and in order of shade. Whenever I wasn't thoroughly distracted I would make sounds with my mouth. Each sound had to both feel and sound exactly the same, and obey specific rhythms and patterns. The same went for tapping with my hands, feet or fingers. Most children play a game of not stepping on cracks when they are walking. Well, for me it was no game. I distinctly remember one occasion being outside Warner Bros Movie World in the Gold Coast, Australia. This was obviously very exciting for a girl of around 9. Most children race towards the gate. I was very eager and excited, but instead of racing ahead of my family I lagged a long way behind. I could not step on the cracks around each small paver no bigger than a brick. So, there I was desperately trying to get inside the gate, but being forced to make my painfully slow way ever so carefully paver by paver. All the while my family was yelling at me to hurry up. I was not a purposefully disobedient child. I simply was unable to obey in the cases where my OCD took over. The threats made by my OCD were far worse than any threat from my parents, or anyone else. At that stage of my OCD I was not yet getting specific thoughts or images. Rather, I would feel an immense feeling of anxiety and doom if I didn't do what my brain was urging me to do. These are just some examples from my early days with OCD. When I moved into my early to mid teen years things took a very rapid turn for the worst. I began getting thoughts and images attached to each urge. For me the intrusive thoughts focussed mainly on death, severe illness, and immodesty. I would close and open doors and drawers over 50 times, and would repetitively check locks. I would panic and rigorously clean myself if I touched anyone or any common property, or had someone breathe too close to me. If I saw particular letters that would trigger associated OCD thoughts (for example, the letter 'D' would trigger thoughts of death) I would madly scramble to find a 'good' letter to cancel out the effect of the 'bad' one, or else, I believed, the threats made by my OCD would come true. The same went for hearing trigger sounds and words. I began having severe difficulty sleeping. I would barely sleep, taking literally hours to fall asleep, and waking up constantly. Getting ready for bed took literally hours as well. The bathroom became a torture chamber where I would stand trying to clean every mark from my face for so long that my knees ached. I was scared. I was not in control of my own mind. I just wanted to stop, walk out of the bathroom, and go to bed, but I could not. I went from being a student who had been recognised as gifted, and receiving numerous academic awards, to being unable to read, listen, write or discuss. There was constant screaming in my head. One voice was me, screaming for help and to escape. The other immeasurable numbers of voices were from all the urges, thoughts and messages bombarding me. I wanted to cover my eyes, block my ears, and feel nothing, all to limit the stimuli that would trigger an OCD thought. This rapid decline happened within less than two months. Shortly after I began to develop psychosis (a severe mental disorder in which thought and emotions are so impaired that contact is lost with external reality), or perhaps what the layman may term delusional. The form this took was that I was no longer certain that the intrusive thoughts from my OCD were illogical. For example, in most cases a person with OCD would know that seeing the letter 'D', and not then quickly reading a good letter that cancels out its affect, would not really mean they would die even though the OCD is telling them this. In my case I was uncertain. Part of me believed that if I didn't do what my OCD was urging me to do then its threat would become true. I began taking ages to move anywhere because I had to smile properly at every photograph or image, and make each one 'feel' my care for them. Where I had once been a friendly and bubbly, albiet shy person, I became like a walking shadow to others. I would barely talk to anyone. I would sit silently near my friends, occasionally watching what they were doing, but with my mind so occupied with the warring thoughts and feelings from my OCD I watched only with very vague awareness. Often I would suddenly get up and walk away without saying a word, not out of rudeness or disinterest, but out of a desperate attempt to escape from the triggering stimuli. My inability to communicate was partly due to my mind being so occupied I couldn't pay attention to anything else, and partly due to the existence of trigger words and sounds that I would hear, which would flare up my OCD. As things got worse I became paranoid, believing demons were out to kill me. I became so desperate that at the age of 16 I confided a very small amount of my difficulty to a youth worker who worked at a youth centre I had begun to frequent. I found it very difficult to talk about problems affecting me. He was the first person who was able to not only earn my trust but make me feel comfortable enough to open up. I will be forever grateful for his help, and know that he may very well have saved my life. We went to see a psychologist through the Child and Adolescent Mental Health Service. They were good. I don't deny that, but the environment of the service, and the manner and personality of the psychologist and psychiatrist meant I was unable to open up to them. I began to be medicated with medications that help to combat OCD and anxiety. This helped a little, but not a great deal. I began to become severely depressed, especially as I found that my OCD was so bad the cognitive behavioural therapy that is usually very effective for OCD was not working for me. The big sticking point we kept returning to was my inability to accept the irrationality and lies of my OCD. As I moved into my late teen years my relationships with others declined. I avoided most people. I felt like everyone around me were shadows, fading and transparent in the face of the stimuli and thoughts that were so much more real to me. I stopped going to the youth centre, which had been the one thing keeping me connected to the real world, people, and support. I ended up dropping out of school permanently. I had retried several times, but each time I failed, unable to even remain within a classroom with all the triggers of words and speech. Even my psychiatrist at the time told my parents that school was not my priority at that time. A few years later, at around the age of 18 or 19 I became so desperate I ended up at the hospital. Just how desperate I was to visit the hospital can best be understood by people with OCD. Hospitals are full of triggers for many people with OCD, particularly those of us with difficulties coping with contamination issues. I also found it incredibly difficult to ask for help, even for very basic things like not understanding a question in school. Yes, I was the most desperate I had ever been. I couldn't cope. I was screaming in my head. I had been self harming, not out of a will to die, but because the physical pain, shocking image, and chemicals self harming sent through my brain was the only thing strong enough to quieten the screaming, thoughts and stimuli. It was the only way I could get a small break where I could feel and see more clearly. I spent a long time being sent from psychologist to psychologist, and was seen several times a week at first by CATT (Crisis, Assessment and Treatment Team), and later by MITT (Mobile Intensive Treatment Team). The psychologists failed to listed. Instead, the attempted to dictate to me the thoughts I was experiencing, explaining nothing about OCD, and cutting me off mid sentence. On the other hand, CATT and MITT were better. They are teams comprising a psychologist, psychiatrist, case manager, and several other professionals. They explained OCD to me. Just understanding what was happening to me helped a lot with the fear. However, my OCD was still spiralling out of control. How did I get to where I am now? How am I able to write, read, talk, and take care of myself? I became so sick of my OCD, so sick of what it was doing to me, that its' threats became hollow. I felt that nothing that could come true from my OCD could possibly be any worse than the hell I was already living in. One day, just one day, I decided I had had enough. I stopped going to the psychologists, and stopped taking medicine. I disappeared from the world of being a mental health case, embroiled in the public mental health system. I was sick of it all, and wanted no more part of it. At the time I felt that if the threats made by my OCD were to come true then so be it, even if that meant death it would at least give me some peace at last. At first the thoughts got louder, and I came to a very dangerous precipice where I could have snapped and been lost forever. Ever the survivor (as my previous youth worker would have put it) I got through that time, and slowly the thoughts became quieter, and my ability to resist them greater. Now, around 5 years later, I still get the OCD thoughts, albeit much less of them. I still slip up and perform compulsions occasionally. Sometimes it is hard to realise when something is a compulsion. The hardest thing is being able to tell when something is an OCD thought, and when it is not. This is particularly so as the remnants of my psychosis still hang around. Even as I wrote this I caught myself doing several repetitive movements, and have had to resist numerous thoughts and triggers, which is why this has taken so long to publish. My apologies for that. I have kept this personal story very short for ease of reading, but if you would like more information please feel free to ask any questions you have. I decided when I began writing this that I will not hold back any information anymore so that others with OCD can receive better understanding and support than I did.

WARNING do not stop seeing your psychologist or taking your medication as I did. This is very very dangerous. I was lucky, Alhumdulillah. Most people relapse severely if they do this, and some end up dead.

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