SUPPORT, INFORMATION & AWARENESS ON TIC CONDITIONS, OCD, PANDAS / PANS AND RELATED CONDITIONS
Obsessions: Obsessions include intrusive thoughts, fears, urges, worries, fixations, ideas or images that cause marked anxiety or distress.
These can include: Terrifying visions of things that you fear or that go against who you really are (ego-dystonic) and thoughts of phrases that you disagree with but that use your inner voice so it sounds to you like you are really thinking these things, but that is just the intrusive thought tricking you. It can also include thoughts where it seems like someone is saying horrible things or saying that bad things may happen, some people may have inappropriate ‘impulses or urges’ that they are afraid they will act on, some people may obsess over worries or concerns that most people wouldn’t even focus on, some people might have an obsession with a certain concept such as ‘gratitude’ for example, leading them to constantly express gratitude (compulsion). Some people may have certain fears which become an obsession, such as the fear of being unloved, the fear of being misunderstood, the fear of doing the wrong thing, the fear of secretly being evil, the fear of contracting an illness, the fear of being a psychopath or anything else. It can also include extreme doubt, where specific things become uncertain even though we know they shouldn't be and that the doubt is ridiculous but we don't seem to trust ourselves and sometimes things don't even seem to register.
Obsessive Compulsive Disorder
Compulsions: In an attempt to neutralise the intrusive thoughts another thought or action is done to try and reduce anxiety or reduce uncertainty, or to prevent bad things from happening, the latter is termed ‘magical thinking’ and can be quite common in individuals with OCD. The problem is that the more you try to stop intrusive thoughts, the worse they get as they are uncontrollable, and the compulsions may reduce the anxiety but they can fuel a vicious cycle. However, it is not as simple as just stopping the compulsions as the anxiety, fear, shame, dread and guilt in reaction to the intrusive thoughts can be immense, it can take time to manage through therapies, but we cannot simply just stop these things as we know that it can seem ridiculous, but we can feel out of control.
You can also have intrusive thoughts without OCD / compulsions as other conditions may cause intrusive thoughts as well.
It is important to know that realistically we do know that we are not these things that the intrusive thoughts try to convince us of and we know that the fears can be irrational, this is what separates an obsession from a delusion, as we don’t necessarily believe it. However, OCD causes everything to seem uncertain, even things you were once sure of, which is why it was termed the ‘doubting disease’ and people feel the need to try and find certainty.
Some people may have obsessions with certain numbers or colours, some people may have a special number and they may do a compulsion that many times, for example I used to like the number 3 and did my hand drying ritual whilst counting to 3 over and over again, some people may dislike certain numbers and see them as ‘unlucky’ or ‘evil’, for me that was the number 4. Some people may avoid certain colours as they may associate them with bad luck, and some people may try to avoid other things that they deem as ‘bad luck’ as well such as certain symbols.
Diagnostic Criteria: Either Obsessions and/or Compulsions in which are unrealistic or excessive and take at least a total of 1 hour a day to perform such tasks.
Types of OCD:
Morality / Scrupulosity OCD:
- Excessive dominated thoughts of wrongdoing, sinning, being in trouble, not being good enough, and feeling constantly guilt-ridden that you will be found out to be a liar or a cheat in some way. (Example: Following religion correctly, obsessively following a spiritual practice, having to do the ‘right thing’ all the time)
- Some people may have an obsession with following the ‘right path’, they may be afraid to make decisions or do simple things in case it's the ‘wrong thing’ that could send them down the ‘wrong path’, sometimes this way of thinking can be incredibly rigid, like taking the ripple effect from simple actions very literally.
- People may have intrusive thoughts that go against their morals, values and beliefs, for example, involuntarily thinking disrespectful things about God, thinking horrible phrases that go against your beliefs etc.
-People may pray excessively, opt out of making decisions as they don't know if it’s ‘right’, read scriptures constantly, obsessively practice gratitude, ruminate about whether they may have done anything wrong and whether they have ‘learnt their lesson’, apologise constantly, try to neutralize the intrusive thoughts with the compulsions, obsess over whether they are doing, feeling or thinking the ‘right thing’, they may have an avoidance of religious or spiritual things as they know it will trigger the uncertainty and ruminations as to whether they are doing it ‘right' or they may go to religious establishments very frequently etc.
- If a person does something that could be perceived as ‘bad’ or ‘wrong’ they may panic and feel very intense guilt and shame, out of proportion to the situation, which can cause many emotional issues.
- People may live in fear of doing the wrong thing and may review every action.
- People may research things about spirituality or how to ‘be a better person’ and may try to excessively incorporate these characteristics into their daily life or may fear that they won't or may feel intense shame for the times they haven't. Sometimes people may avoid looking things up along these lines or avoid making changes, because that may mean that they are ‘doing something wrong’ and may be angry at themselves for not already doing these things.
Perfectionism OCD:
-The literal need to seem perfect to others around you (Must do everything correctly otherwise feelings of shame arise)
-People may repeatedly check for typos to ensure that they haven't made a mistake, but the amount of rereading can become excessive.
- People may reread things multiple times out of the fear of misunderstanding or not taking in what the text says.
- People may worry so much about not doing things perfectly when doing work that they procrastinate and avoid doing the work at all.
- When having conversations, people may repeat themselves to ensure that they are understood, or may ask others to repeat to ensure that they fully understand what they are saying.
- People can suffer with low self-esteem as they feel that nothing the do is ‘good enough’
-If someone doesn't do something perfectly they may ruminate and think self-critical thoughts, sometimes this is a compulsion because if people don't do this or don’t feel ashamed they may feel as if they are ‘getting away with something’.
- People may feel that mistakes are catastrophic and may feel intense shame for things that other people wouldn’t be worried about.
- Perfectionism OCD can be very severe, the slightest mistake can send someone into a deep depression, and some people may feel like they don’t deserve to live due to the slight mistakes they have made. Some people may feel that they have let people down or disappointed others, which is why it is often accompanied by depressive states.
Sexuality OCD:
- The repeated worry or intrusive thoughts about your sexuality that causes distress and difficulty functioning.
- This is different to someone wondering if they are genuinely a different sexuality, this is the inability to find certainly that causes immense distress.
- Some people may worry that by accidentally looking at someone's breasts, for example, would that mean that they are secretly a lesbian?
- People may just worry about the uncertainty, they may know their sexuality, but their OCD causes them to doubt it, making them question whether they are LGBT and just don’t know it.
- People with this form of OCD may have intrusive thoughts about same sex relationships which can cause anxiety and dread, but it should not be assumed that people with this form of OCD are homophobic as they can be very accepting of others' sexuality, as we know that there is nothing wrong with being LGBT+ , and everybody has the right to be accepted for who they are.
- People may have worries about whether they are gay and whether that will mean that they have to leave their wife and kids, for example, or they may worry that the way they are sitting makes them ‘look gay’.
- LGBT people can also have sexuality OCD, and may worry about becoming straight as it could change their identity, or they may have the uncertainty surrounding their sexuality.
- This isn't about someone genuinely questioning their sexuality, it is a full on obsession that causes distress, a person may know they are straight but may still obsess over the fear of being gay.
Relationship OCD:
- This subset often revolves around excessive fear and doubt that you may cheat on your partner, fall in love with another or secretly be in love with another, or if you're good enough or if they are not ‘right’ for you. Some people may have doubts and worries about whether they really love their partner that can cause immense distress.
- People may obsessively take relationship tests, read articles on relationships, or journal about their relationship to try and get some clarity, they may have constant rumination about the relationship and whether it will work out or trying to figure out whether the individual themselves is secretly in love with someone else, some people may have the urge to break the relationship off, they may monitor their thoughts about the relationship, they may make comparisons with other people’s relationships, people may seek reassurance from their partner etc.
Existential OCD:
- The involuntary obsession over very deep questions such as questions of the universe, why we are alive, the meaning of love, why we have gratitude, how things in the world add up to make sense etc.
-People may ruminate for hours trying to find certainty, otherwise it can feel as if everything is pointless, if you are plagued with these questions and cannot find an answer as the mind doesn't have the answer, then you may not see the point in doing anything or living your life.
- People may read countless articles or watch documentaries trying to find answers to their minds' questions.
-This is different from normal existentialism due to the frequency of these thoughts and the impact they have on someone's life, it can be debilitating. We all wonder about these questions from time to time, but for someone with this form of OCD they feel as if they NEED an answer, it is not just curiosity in this case, it is desperation and means that someone may be unable to fully live their life.
Tourettic OCD:
-Tourettic OCD is a distinct entity from classic OCD in the sense that it is purely compulsion based, without obsessions. People with this form do not have the intrusive thoughts, fear or anxiety preceding a compulsion or ritual, instead they have a sensation, termed a premonitory urge.
- The rituals and compulsions in Tourettic OCD look identical to those in classic OCD, so can include tapping, time-consuming rituals, not stepping on certain areas of the floor, scrolling up and down, opening and closing doors, clicking fabric until it ‘feels right’, handwashing, hand drying etc. The only difference being that it is not fuelled by fear or anxiety, we know that nothing bad will happen if we don't complete the ritual or compulsion, but if we don't do it then the sensation gets stronger to the point where it can be unbearable.
- CBT is not usually effective for this form of OCD because it is not thought based like classic OCD and other forms, there are no thoughts to work with that are fuelling the rituals, just sensations so the CBT principal doesn't work, ERP can make it worse due to the suppression element. It is usually managed in the same ways as tics.
- Tourettic OCD rituals can last hours and have multiple stages , they can take up most of the day and be physically incapacitating, leaving an individual unable to do daily tasks such as dressing, washing or toileting.
- For example, a hand washing compulsion may occur, not due to the fear of germs, but due to a sensation stuck on the individuals hands.
- Some people have phantom tics, which are out of body sensations that can attach to your surroundings and the individual may feel it on door handles, causing them to slam the door into the wall repeatedly, they may feel it on the floor, so they cannot touch that area of the floor and may avoid it, some people may feel it around them and it can feel like it is pulling them to do the ritual like an elastic band and they can physically feel this sensation floating around them and it may seem to follow them about and antagonise them until they do the ritual, some people may not be able to articulate it and may describe it in metaphorical ways, for example, when I was younger I called it ‘sticky magic’.
Pure O OCD:
-Obsessions/intrusive thoughts yet do not have any outward compulsions and instead have covert / mental compulsions.
-Some people with pure-O OCD may fear that by having negative thoughts then something bad may happen, due to karma for example. It is important to know that everyone has negative thoughts.
- Some people may argue with the intrusive thoughts inside their head, as the intrusive thoughts may seem like someone is saying something in the mind, but this is completely separate to a delusion as we know that it is just a thought and that no one is really in our mind.
- People may have mental compulsions where they try to erase the thought, apologise in their mind, pray in their mind, visualise something, do a mental ritual, repeat a mantra in their mind, affirm over the intrusive thoughts, try to rethink the thought without the bad thing happening and more…
- Having so many mental compulsions can make it virtually impossible to focus on your outside surroundings, so people may seem a bit ‘spacey’ or ‘absent minded’ as their attention is focused on what is going on in their mind.
Compulsions can be either Overt or Covert
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Overt: Overt compulsions are the ones that are done outwardly and are visible to others.
These can include ( but not limited to) : straightening things, handwashing until the skin on your hands is red and raw, excessive hand drying, repeating yourself, ripping things up a certain amount of times, opening and closing doors, checking the stove, long, laborious, time-consuming rituals with multiple stages, tapping things, not stepping on certain areas of the floor, banging things repeatedly, scrolling up and down on a laptop, erasing and rewriting things you have written, excessively checking things such as labels or an email you have written, reassurance seeking where you either ask people things repeatedly in order to try and get certainty or look things up on the internet, making lists of reasons why you wouldn’t do something, repeating certain words (not as a tic), pulling clothes up and down when dressing, having to do things a certain way, needing to ‘even things up’ or have things in certain places, doing things a certain amount of times and much more…
Covert: Covert compulsions are also known as mental compulsions, these are compulsions that occur in the mind.
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Covert compulsions can include: Rumination to try and figure something out, thinking the opposite of the intrusive thought, arguing with the intrusive thought, praying in the mind, visualising something, counting in the mind, repeating certain words in the mind, having mental rituals, trying to affirm over the intrusive thought, memory checking, intention checking where you try to figure out your own intentions as it makes you doubt your own character at times, emotion checking ‘Am I feeling the right way in this situation?’, sensation checking, trying to 'unthink' the intrusive thought and erase it, and much more.
Emotional / Mental Contamination OCD:
-The excessive worry that you may accidentally either transmit or catch emotions onto / from others, an individual may worry about going near others in case they transmit their emotions or may worry about thinking about people in case their emotion is sent to them.
- Some people also have mental contamination OCD, where they may feel that by thinking negative thoughts, they become contaminated and their energy is ‘unclean’.
- Some people may feel that the idea of a certain person is contaminated, if they feel feelings of betrayal or disgust around a person, they may wash after being with that person, not touch that person's possessions or avoid the person as the general idea of them or the emotions that they evoke can be seen as a contaminant.
- People may fear that by being around others with ‘negative’ personality traits, they may acquire these traits.
- People may avoid family members or friends and not go near them due to the fear of contamination
- Some people may have psychological feelings of ‘dirtiness’ that may cause them to try and wash it away, without the fear or obsession with a physical perceived ‘contaminant’ such as dirt or germs.
- In severe cases, Some people may think that their emotions will contaminate the world and cause bad things to happen, this can make someone wonder whether the world would be better off without them as they worry that their emotional state may be linked to word events, and may worry about being responsible for these things due to how they feel.
Germaphobia / Contamination OCD:
-Absolutely terrified of germs, unclean things, contamination or getting ill/becoming sick due to germ exposure.
- People may spend hours handwashing or take multiple showers or baths everyday.
- People may change their clothes multiple times a day when they feel they have been 'contaminated'
- People may not touch door handles or other things that could be 'contaminated'.
- People may struggle to eat due to the fear of the food being 'contaminated'.
- People may feel like if they got germs on them they may acquire a serious disease.
- People may be afraid to breathe in certain places as they may feel that the air is 'contaminated'.
Just Right OCD:
-The need for everything to be “just right” such as needing things to be symmetrical, needing to have things in a certain place, evening things out, ordering things, or lining things up perfectly.
- People may spend hours trying to align things or even them up, this can include shoes, pencils and pens, papers or other things. It can feel like there is a sensation around it, similar to Tourettic OCD, or that it just needs to feel ‘right’.
- It can feel like it won’t let you win, because if it is straight then it is ‘too perfect’ but if it is wonky then it is ‘not straight enough’ so it goes on and on in this cycle but won’t let you leave it alone as you are compelled to do it.
- Things may need to be in a certain place, or touched in a certain way.
- Socks may need to be the same height so that they are even, for example, people may spend ages trying to make sure they are equal.
Paedophilia OCD:
-People may experience horrific intrusive thoughts about being a paedophile and are ego-dystonic meaning that these intrusive thoughts are ones in which the person is most against. Intense shame may be felt as the person may think there is something wrong with them but it's important for the person to know that it isn't them thinking these thoughts, it is the OCD.
- People may sensation check to see if they are feeling attraction around kids, they may avoid children in case they become attracted to them or have intrusive thoughts around paedophilia.
Some people may avoid to such an extent that they don’t want to leave the house.
- Parents may worry about being attracted to their kids or whether they would want to engage in a sexual at with a child close to them, this causes immense fear and distress, as it is what the person is most against, this is what separates paedophilia OCD from actual paedophilia, people who have OCD are disgusted by their thoughts and fear it, until they know that it is just an intrusive thought, whereas a paedophile would like it, unfortunately, the OCD causes so much doubt and uncertainty that people may feel deep shame and begin to believe that they may be a paedophile.
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Harm OCD:
-The excessive worry that you may accidentally harm someone or that you may have harmed someone in the past without realising.
- May have intrusive thoughts about harming those you love, sometimes the thoughts are violent and aggressive and may worry about accidentally acting on these.
- May worry that they are really a vicious or aggressive person, when they are not.
- May be terrified that they may hurt someone on impulse, or that they may be responsible for causing someone harm.
- People may hide dangerous items from themselves or avoid them such as knives, chemicals etc.
- Some people may also have intrusive thoughts about harming animals or themselves, and this can be incredibly distressing.
- Trying to figure out whether they have anything in common with criminals or violent offender, people may research this to try and find out.
- They may review every action and play out past events in their mind to see if there is any way they could have caused harm, sometimes the mind can play tricks and the individual may be almost convinced that they harmed someone.
- They may seek reassurance from others as to whether they have harmed someone.
- Some people may worry that by having these intrusive thoughts, it may harm the individual who is in the thoughts just by thinking it.
Time OCD: The obsession with presence, or wondering whether you are doing things too fast or slow.
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Checking OCD:
- This is where people may feel compelled to check things such as light switches to ensure that the light is off, they may check to ensure that the stove is off or that the door is locked, they may check
an email repeatedly before they send it, they may re-read labels over and over again, they may check that their friend is still friends with them on Facebook etc.
-Some people may have checking compulsions that others cannot see such as intention checking to try and check in their mind that they have pure intentions and this can cause a lot of rumination, some people may have sensation checking rituals where they check whether they are feeling any sort of inappropriate attraction (common in paedophilia OCD) , Some people have emotion checking to see if they are feeling the ‘right way’ in a specific situation or to see if they have enough empathy etc, some people may check past events through rumination to ensure that they haven’t missed anything, some people may repeatedly recall information in their conscious mind to check that they haven't forgotten.
-Everyone checks things sometimes, but with this form of OCD, it is incredibly excessive and can take up a lot of someone's time, and most people would be able to brush these concerns off such as ‘Did I turn the light off?’ and they would be able to stop after one check, but someone with this form of OCD cannot stop thinking about it or obsessing over it and it causes immense distress and anxiety over something that wouldn't really bother people without the condition. No matter how many times they have checked, they are still plagued with doubt.
Sensorimotor OCD: The excessive awareness of bodily functions such as breathing, swallowing or blinking. People may overthink these things and wonder whether they are breathing correctly or whether they are blinking too much, they may panic and worry whether or not they will ever be able to stop focusing on these things.
Hoarding OCD:
Some people may keep things that could easily be thrown away, due to the fear that it may be needed or come in useful one day, even though it is unlikely.
Some people may have the fear that if they throw something away, then something bad may happen (magical thinking).
Hoarding disorder is different from OCD, but some people with OCD may have compulsions that involve hoarding due to uncertainty and fear.
These are just types of obsessions and the common compulsions that can go with them, some people suffer from multiple types of OCD concurrently, or can develop other obsessions over time. Children with OCD may become aggressive or frustrated if their compulsions are thwarted due to the distress and anxiety that this can cause. OCD is said to be a lifelong disorder, but some people can go into recovery with treatments and can use techniques to prevent relapse. It is vital that there is awareness of OCD and that it is understood, because some people live for years with intrusive thoughts, accompanied by intense shame, guilt, deep sadness, fear and anxiety, because they may feel like it is them thinking these things, when in fact it is the OCD. OCD can be linked to intense superstition in regard to the magical thinking, that some people may think that if they do something, think something or don't do something, then bad things may happen, even though we know it sounds ridiculous, we cannot just brush it off like most people can. Many people think of OCD as a quirk or a personality trait, when in fact it is a mental illness, which in some cases can be debilitating. It is vital that people are taken seriously and not ridiculed, this condition is nothing to make light of, it is distressing and disabling and people need to be met with empathy, understanding and compassion. It makes a difference when we learn that it is OCD and nothing wrong with us as a person, when we reach out and seek help, we realise that there is no shame in having this condition, and that it's not our fault and that we are not alone in this. OCD can cause us to feel like our thoughts are a reality, even though we know they are not, and is can be important to know that thoughts are just thoughts, and thoughts cannot make bad things happen in this way, and that it is our actions and what we do that make us who we are, not the thoughts as we are not our thoughts. OCD has been associated with inflammation of the brain.1 A study published online in JAMA psychiatry showed that brain inflammation is approximately 32% higher in people with OCD than people without the disorder, and the higher the level of inflammation, the more intense the anxiety was when trying to resist a ritual.
1)Attwells, S., Setiawan, E., Wilson, A.A., Rusjan, P.M., Mizrahi, R., Miler, L., Xu, C., Richter, M.A., Kahn, A., Kish, S.J., Houle, S., Ravindran, L. and Meyer, J.H. (2017). Inflammation in the Neurocircuitry of Obsessive-Compulsive Disorder. JAMA Psychiatry, [online] 74(8), p.833. Available at: https://jamanetwork.com/journals/jamapsychiatry/fullarticle/2631893.