I wanted to share the lyrics of a song which describes my experience with OCD almost perfectly. I discovered the song when I was about 16 and it’s been important to me ever since. The funny thing is that I’m relatively sure it wasn’t written with OCD in mind. One of the band’s vocalists had some symptoms of OCD, but I haven’t been able to find out how much he contributed to the lyrics (and from what I can tell OCD wasn’t severe for him). OCD can be an alienating experience – although it’s closely linked to anxiety it’s very different to anxiety due to the sheer audacity of the things it comes up with. So it’s not often that you see something represent OCD by accident. Anyway, here are the lyrics:
Nothing ever stops, all these thoughts and the pain attached to them, Sometimes I wonder why this is happening, It's like nothing I can do would distract me when, I think of how I shot myself in the back again, 'Cause from the infinite words I can say, I put all the pain you gave to me on display, But didn't realise, Instead of setting it free, I took what I hated and made it a part of me.
It never goes away, It never goes away.
And now you've become a part of me, You'll always be right here, You've become a part of me, You'll always be my fear, I can't separate myself from what I've done, Giving up a part of me, I've let myself become you.
Hearing your name the memories come back again, I remember when it started happening, I'd see you in every thought I had and then, The thoughts slowly found words attached to them, And I knew as they escaped away I was committing myself to them, And every day I regret saying those things, 'Cause now I see that I took what I hated and made it a part of me.
Get away from me! Give me my space back you've got to just go, Everything comes down to memories of you, I've kept it in but now I'm letting you know, I've let you go so get away from me, I've let you go.
I was going to write some explanations of how these lyrics relate to OCD, but I think that’s probably quite obvious. It’s a great description of how OCD creeps up on you and convinces you to do the very things that increase its power over you.
A quick note of comfort – this song really helps me when I’m feeling fed up of the whole thing, but the reality is not completely bleak. I’m optimistic that OCD won’t “always be right here” and that one day I will beat it again. Actually I realised that I spend quite a lot of time in these posts attempting to reassure and comfort anyone with OCD who may be reading – which in itself could be a manifestation of OCD (trying to keep people safe and feeling excessive responsibility for other people). It’s not stopping me being able to post though, so if it is OCD it’s a manageable symptom.
Proceed with caution if you have religious OCD, especially if it’s based on Christianity – here I talk about some of my religious thoughts without going into detail on why they’re wrong (though be assured they are wrong, as is every OCD thought).
Just got back from a dog walk. I fought hard with OCD on this walk – specifically, by allowing my feet to face white marks when I was walking, even if there was a beat at the same moment in the song I was listening to. This post is about the point at which I struggled most during the walk, due to a specific thought which took hold more than the others did.
The thought
There was a word in a song I was listening to that sounded a bit like “fool” (I don’t think it was “fool”, it might have even been a French word). My foot was pointing at something white, and in OCD parlance that means using that word to describe the Holy Spirit (white = Holy Spirit). OCD tells me that this in turn means I will go to hell, due to insulting the Holy Spirit. This is bolstered by a Bible verse in which Jesus says if you call your brother a fool you’re in danger of the fires of hell – so I’m quite nervous about the word “fool” in general, even though I’ve heard other Christians use it without concern, and even though I don’t really believe in hell. Interestingly it takes a whole paragraph (with additional links) to explain this thought, but in my head it’s pretty much instantaneous – all those connections are just something I “know” less than a second after it’s happened.
Whether to neutralise the thought
OCD said I had to neutralise what I’d done by winding the music back and walking back to the spot in order to “take it back” or “take it back into myself” by making some kind of mental movement towards myself whilst my foot was pointing at the white mark and the word came up in the song. Alternatively I could neutralise it by thinking or saying “no” or “not” whilst pointing at the white spot with my foot at the moment the word came up in the song. This would, according to OCD, “undo” what I’d done wrong. (Incidentally, beware of OCD claiming that your compulsion can make something ok – OCD will never be satisfied that you’ve done it correctly enough for it to be truly safe).
Choosing not to neutralise it
I didn’t want to neutralise it as I’m trying to do exposure when I walk. So I spent about 3 to 5 minutes stood still trying to work out what I should do (my dog meanwhile had a lovely run in and out of the woods). Then (and now) I don’t have a great deal of access to the reality that this is preposterous and makes no sense – it feels quite real. Nevertheless I used the arguments that a) God knows it’s OCD and doesn’t want me to obey it, b) my brain can’t use safety signals properly, so it won’t be possible for me to feel that it’s ok; I have to choose to believe it is safe even though it feels threatening. I didn’t go back in the end, though I’m still feeling anxious about that decision about half an hour later. My Fitbit reckons I was doing cardio exercise during this walk (a leisurely walk in the sun + OCD = 143 beats per min – I’m not especially fit but I’m young and physically healthy, so it shouldn’t be this high).
We walked through a meadow a bit like this
Yesterday, when I walked the dog with my mum and sister through a meadow, my sister commented on how nice it was and that we were living our best lives. I brought the tone down a bit by adding that I was in the process of trying to prevent my eternal suffering. It reminded me of a joke John Robins made, that when he goes on holiday he can’t relax because he (i.e. the problem) is still there. OCD is there 24/7, whether I’m in a relaxing situation like having a massage, whether I’m concentrating on something or doing my favourite activity. It did stop for 20 minutes when I gave an important talk recently as all my mental resources were focused on the talk. OCD also shut up for the majority of episode 5 of Game of Thrones season 8, as it’s my favourite programme and a lot was happening. OCD was there as usual in episodes 4 and 6 though.
My posts have been getting a bit long so I’ll try and keep this short! My exposure therapy for this week is to walk to places without listening to/obeying what OCD says about how I should walk.
I’ve written previously about how OCD makes it hard to walk. Typically, I have to think about almost every step, and place my foot in a manner that is “safe”. This involves making a decision about each step based on the marks and objects (e.g. grids) on the pavement. Marks become particularly important if they are white, red, or comparable to white or red, e.g. a brown grid counts as red, an old chewing gum stain counts as white. This makes it tiring to walk because I’m doing so much in my head, and can end up with me walking back to walk past a spot again if I haven’t done it “safely” the first time.
Today and yesterday I deliberately tried not to adjust my walking according to OCD, as this is what my therapist and I decided I would do. This is a form of exposure therapy. It did raise my anxiety quite a lot, and I didn’t really experience the pattern of high anxiety followed by decreasing anxiety, which is what you would expect and aim for during exposure. This might have been because of the different levels of distraction I had at different times. The anxiety started high and fluctuated across the course of the walk – when I saw a dog and texted my partner about it, my anxiety went down a bit. I like to listen to music when walking but it does interact with my OCD. Generally, my OCD makes me concerned about where I step/what my foot is pointing at/what colour I’m looking at on certain beats in the music. I also have to be very careful how I’m standing/what I’m looking at when the artist says swear words or insults.
At one point I thought “I’m just walking, like people do!” which was a nice moment. I haven’t been able to just walk like other people do for a few years now. I’m cautiously optimistic that this is the start of getting back to being able to walk without OCD wittering on in the background. My therapist emphasised that I should reward myself for effort, not achievement, so I’m going to have some baklava and a sit down later on.
I started this intending to write about the exposure work I’ve just done, but it turned out I have a lot of thoughts about exposure therapy for OCD, and the NHS provisions for OCD, so I’ll put them here and write a different blog about today’s exposure.
Cognitive behavioural therapy for OCD
The recommended treatment for OCD is cognitive behavioural therapy (CBT) combined with medication (usually antidepressants). One component of CBT is exposure therapy, which involves repeatedly approaching the thing that makes you anxious (yes, it is a brutal form of therapy). Usually you’ll rate your symptoms in a hierarchy of the least difficult to the most difficult, then you’ll start with exposure to the least difficult, and move up the chart. The theory behind it is that when you first encounter the frightening object/situation, your anxiety will spike, but if you stay with that anxiety then it will gradually come down. With practice, the initial spike of anxiety should be lowered.
This technique works pretty well for things like contamination OCD. For example, touching a toilet seat and not washing your hands – this would initially cause a lot of anxiety, but over time the idea is that this anxiety will decrease. In this example it also allows the individual to collect evidence that they have touched the toilet seat and neither they nor people around them have dropped dead from germs. Exposure alone is not so good for religious themes, in my opinion – I could do the things that OCD tells me will send me to hell, but there’s no way for me to see that this won’t send me to hell.
My previous experiences with CBT for OCD
The good
In 2012 I had successful CBT for religious OCD. It did involve exposure, but we spent months working on cognitive reappraisal before I attempted the exposure. This strategy worked, because although exposure was terrifying, I could fall back on my logical arguments that showed me that OCD was lying. In this case the cognitive reappraisal took the place of the “evidence” that I might have had if I was dealing with a different OCD thought (e.g. evidence that no one died following contamination based OCD exposure). It also helped that my therapist had an in-depth understanding of OCD and was a Christian, which allowed her to easily differentiate between what was OCD and what was typical for other Christians (e.g. praying for forgiveness is typical, but compulsively doing so can be OCD). This was before the NHS “reforms” really started to bite, so I was able to have quite a long period of CBT before it had to end because they were prioritising people with “more severe” conditions such as psychosis, and I wasn’t suicidal. Thankfully we’d done enough work that I was able to continue improving over the following months even though I wasn’t having therapy.
The bad (sort of)
In 2016/17 I had unsuccessful CBT for religious OCD (I had stayed well for about two years after the 2012 CBT, but had got ill again). This was with an IAPT therapist who, as far as I know, wasn’t specialised in treating OCD or religious OCD. She was very focused on exposure and not keen on me using cognitive reappraisal. I told her that beginning with reappraisal had worked for me before, and that I had had many years’ experience with CBT and knew what had and hadn’t worked (I had had a lot of less successful attempts at CBT prior to the successful 2012 attempt I described in the previous paragraph). Unfortunately she was worried that if I focused on reappraisal it would end up being rumination (which is a symptom of OCD). This is a valid concern in general, but it wasn’t appropriate in my case as I had 2 decades of experience with the way my OCD operates and 10 years’ on-and-off experience with CBT for my OCD.
I did have some success with the exposure therapy with her, but I had lost confidence in her because she wasn’t willing to adapt according to my experience, so I think that limited the success I could have had. Having said that, I remember feeling that I was working harder than I had done in 2012 when I’d actually got better, so it wasn’t simply to do with my level of effort. Eventually I had to say something along the lines of: I’m not willing to go further with exposure unless we work on cognitive reappraisal. She accepted, but by this point I had nearly come to the end of the 20 sessions that the NHS allows. I was a bit better at the end of that course of CBT than I had been before it. However, that lasted about 2 weeks(!) Shortly after I finished CBT one of my heroes died by suicide – my OCD reacted by getting the worst it had been in years, and it’s pretty much been stuck there ever since. In order to get higher-level help the waiting list would have been 12 to 14 months. Due to my work I didn’t know where I would be living in 12 months’ time. In addition, in order to access that help I was led to believe that I’d need to go via the person who had given the CBT, and I felt awkward about that. I gave up on trying to get NHS help at that time. However, I’ve approached the NHS for an assessment in the place I live in now, so we’ll see what happens. (As it turned out I did end up moving about 250 miles away for work around the time I would have reached the top of the waiting list in that area).
The ugly
Just to make the titles match up nicely, here’s a brief description of a psychiatrist providing “ugly” CBT, from around 2009 before all of the above happened. At the time one of the things my OCD was focusing on was HIV (either that I had it and would give it to others, or that I would catch it from others – it tended to switch between these two, even though logically that makes no sense). I had a cut on my finger and the psychiatrist wanted me to touch the cut to the arm of the chair I was sitting in. I told her I’d had CBT before and was aware of what level of anxiety-increase is therapeutic, and this was too far, but she insisted. I ended up doing it and then rushing in a panic to Tesco after the therapy appointment to buy plasters to cover up my cut. This undid the good work I’d achieved in leaving the cut uncovered. At one point that psychiatrist even said something to the effect of “I can do it so why can’t you?” Not a good experience of CBT.
Back to the good again!
To end the blog on a more cheerful note, I am currently having a small amount of success using CBT techniques with an OCD specialist – we’ve recently started working on exposure. My next post will talk about the CBT I’m doing right now with this new therapist.
I’m privileged that my parents can help me to pay for this private therapist who has expertise in OCD, though I feel a bit ashamed that I am accessing private mental health care when many people can’t. I partly justify it to myself by considering that my job involves improving other people’s lives, and if I can get well then I can devote more energy to my job, though this justification feels a little hollow. I hope that in the future I can pay for high quality, easily accessible mental healthcare through my taxes instead.
It’s important to preface this post by saying that I don’t have a huge amount of knowledge of psychosis – probably more than the average person but nowhere near as much knowledge as I have about OCD. So if you have psychosis and spot something which isn’t right, feel free to let me know!
First of all, I think I speak for many people who have mental illness in saying how pleased I was to hear a celebrity being so open about his experiences with psychosis. David Harewood: Psychosis and Me (at the time of writing, available on BBC iPlayer) was an interesting programme to watch, and reminded me of some of the similarities and differences between psychosis and my own experience of mental illness.
Similarities
The “third party voice”
The part of the programme that resonated with me most was this quote from a woman who is currently managing her psychosis fairly well. She’s talking about how she deals with the voices when they do come up:
Remind myself that this type of thing has happened before, and it’s just my third party voice. Don’t have to listen to it, certainly don’t have to answer to it, it’s just my third party voice, get on with what [I’m] doing.
person with experience of psychosis
I liked the conceptualisation of psychosis voices as a “third party voice”. The way this woman approaches her voices is similar to the way I used to approach my OCD when I was well and got the occasional intrusion. It’s also what I aim to do with some of my bad thoughts now, when I’m trying not to obey them all (I usually make some attempts in each day, but the number of attempts varies depending on how tired and stressed I am). I’m not always successful, but if I can catch/dismiss/ignore an OCD thought right away, it’s easier to move past it than if I “enter into a conversation” with the thought or give it any serious response. OCD tricks your brain into thinking there is an immediate threat – it co-opts the neural circuitry that was designed to keep us safe from physical danger. It’s very hard for your brain to over-ride that – if it were easy we would have died out as a species many years ago.
So the quote from the woman with psychosis is a good example of what relative recovery looks like, in psychosis and in OCD. For me, recovery from OCD involved maybe 5 bad thoughts per day, all of which could be ignored easily. That was like living in a world of colour, compared to the grey I lived in before it.
The structure and content
Another similarity between psychosis and OCD that came out of the programme was to do with how the psychiatrist noted that the structure of psychosis is similar across people, but the content varies. In addition, the psychiatrist talked about how the content of psychosis varies in line with society and the things that are important to the people involved. So psychosis now can involve social media, whereas psychosis in the past more commonly involved religious themes. This is quite similar to OCD in that the intrusive thoughts and the compulsions are often similar across people, but the content depends on what matters to the individual. I’m fully aware that if I have children, my OCD is likely to focus on causing harm to them, because they will be one of the most important things in my life. My OCD now is focused on religion, because my faith is important to me (and also because it’s been the hardest OCD theme for me to beat).
Talking of which, that brings me to another similarity – a woman who was very unwell on the programme said that the devil put something in her neck, and that the devil was in things and people. This reminded me of when I was younger and I had a bad thought that Jesus was in my dad’s slipper. My dad ended up throwing the slipper against the wall in frustration, which didn’t help.
Differences
Do you truly believe the intrusions?
To someone with no experience of either mental illness, I’d imagine psychosis and OCD can sound similar on the surface. The best way I can think to distinguish them (bearing in mind I haven’t personally experienced psychosis), is that when someone with psychosis gets very unwell, they genuinely believe their delusions, and will express them to others without much awareness that they will sound strange (e.g. David Harewood telling his friends he had three brains). A person with OCD who is very unwell often does know that their thoughts will sound preposterous to a neurotypical person (e.g. I know that “my mum will get cancer unless I count to 10” will sound odd to people without OCD). To varying degrees, people with OCD know that the thoughts are intrusions. But we still react to them because they feel as terrifying as they would if they were true.
David Harewood
To look at another example (this could be potentially distressing, so feel free to skip to the next paragraph), a woman in David Harewood’s programme talked about when she walked in front of a white van because she believed she could save her family by doing so (in a supernatural way – she wasn’t suicidal). Thankfully she survived (she said she ran away afterwards, so I assume she wasn’t too badly injured). But as far as I could tell from her telling of the story, there was no other interpretation in her head at that time, it was just something she “knew” she needed to do. In contrast, I’ve found that if my OCD has to compete with genuine life-threatening situations, it quietens down. For example when I was in an emergency lay-by next to a 70mph road, I was able to walk away from the car without the usual onslaught of bad thoughts telling me where to step. With OCD there is always a tension between our knowledge and our fear. [As a side note: writing this paragraph meant my OCD started trying to convince me to walk in front of a van in order to stop my worst fears happening – OCD works with what’s there unfortunately].
I should point out here that I know that some people with symptoms of psychosis, such as hearing voices, often do know that the voices are generated by their own minds. Similarly, people who used to believe in their delusions wholeheartedly but have since had successful treatment can have good insight into what’s real and what’s a symptom (as demonstrated by the woman on David Harewood’s programme, and David himself). The difference between OCD and psychosis is perhaps clearer when it comes to first episodes of psychosis and the people who are the most unwell. From what the programme suggests, people who are very unwell with psychosis are unlikely to be fully in touch with the real world. In contrast, I am severely ill with OCD but I almost always know when a thought comes from OCD and when it comes from me.
Treatment effects
Another difference is that symptoms of psychosis can show dramatic improvements if people comply with their medicine. At least in my experience, this hasn’t been the case for OCD. Despite my initial high hopes, I’ve never noticed a reduction in the strength or frequency of OCD thoughts as a result of taking medicine (even at high doses, and even having tried multiple medicines). It’s likely that this is partly because I’m not personally very responsive to anti-depressants, for whatever reason. But I suspect that medication for OCD in general isn’t linked with the vast improvements in symptoms that have been described by people with psychosis.
There was a lot of talk in the programme of “if I’d got help earlier” or “if I’d taken those tablets” then things wouldn’t have got so bad. I don’t know how true that is of people with psychosis in general, vs how much it was the programme encouraging people to seek help early. But from what I can tell some people with psychosis can see a big, relatively fast improvement in their symptoms if they are prescribed the right medicine, and so intervening at the right moment can make a big difference.
It’s generally correct that the earlier you can get treatment for mental illness the better the prognosis. However, I wouldn’t say there was a moment where I could have stopped myself getting this ill if only I’d done x at time-point y. [In hindsight, not entering into an emotionally abusive relationship would have given me a better chance at getting well sooner, but I didn’t have the self esteem to make a different choice at that time, and I had already been ill for 8 years by then.] When my OCD was presented with medication (at age 17), it just barreled on through. Maybe it would have been different if I’d been given medication at age 11, but I suspect not – my genetics and life circumstances would have been the same, and both would have continued to play their part in maintaining and worsening my illness. [Note – this isn’t to say that there was never any hope – I did get better at age 23 and I am hoping to get better again]. I’m glad that medicine can have such a positive impact for some people with psychosis, and I hope that one day treatments for OCD will catch up.
This post is intended to help both people with OCD and those who support them.
Sometimes OCD sounds absurd (e.g. “my mum will die if I touch the sofa”). However, sometimes OCD looks like an extreme version of an everyday concern. For example, someone may be worried about getting germs from a door handle. It’s perfectly possible for this to be either a) a symptom of OCD or b) a concern held by a neurotypical person who is conscious of hygiene. (As an aside, if you want an excellent example of how it feels to be “stuck” in a bathroom because you can’t touch the door handle, watch The Aviator, a film about Howard Hughes who had OCD).
These thoughts look the same on the surface, but they behave in very different ways. I’ve written elsewhere about how to tell if the thought is OCD or not. Here I want to look at how the best response to an OCD thought can be very different to the best response to a non-OCD concern.
A wolf in sheep’s clothing
Example: Contamination fears
The other day a friend of mine was concerned about contaminating her bed sheets. She was having OCD-driven thoughts that her body would get germs on the sheets. A mutual friend responded to my friend’s concern by suggesting that she could wipe the sheets with a wet wipe or similar. This is a logical solution to the apparent problem, but when the problem comes from OCD, this solution is unlikely to help.
I want to reiterate that I am not diminishing our mutual friend’s attempt to help. Rather, I want to show how the nature of OCD means that advice which would work for a neurotypical person with exactly the same problem wouldn’t work for a person with OCD.
One of the many ironies of OCD is that whilst we can spend hours seeking reassurance that something is safe, ok, or clean, we rarely succeed in accepting that reassurance. No matter how many rituals you do or how many times you repeat an activity, it won’t feel ok (although that doesn’t stop OCD lying that if you just do it one more time you might be able to make it “safe”). I read an interesting paper suggesting that this might be because a specific part of the brain has difficulty sending “safety signals” which tell the rest of the brain that the situation has been resolved. After reading that paper I found it helpful to think to myself “my brain can’t make me feel like it’s ok, so I have to choose to believe that it’s ok”. (Cognitive reappraisal helps me with this – more about this at the end of the post).
So to return to the example, if my friend had wiped her bedsheets, she may have momentarily felt ok, but soon enough the OCD would return and she would worry that she hadn’t wiped them thoroughly enough, or that the cloth she used to wipe it had germs on, and so on.
This ties in with another aspect of OCD that has come out in research – we often over-estimate the extent to which germs can contaminate objects. For example, say I were to touch a toilet seat, and then touch my phone. I then wash my hands and get on with the day. I later make a call on the phone, and later lie down to go to bed. My perception might be that the germs from the toilet seat had transferred from my hands, to the phone, to the side of my head, and on to the pillow. Most neurotypical people don’t think in this way – I sometimes see other women doing their hair in the bathroom mirror before they wash their hands from going to the toilet. I only have mild contamination symptoms these days, but this is an example of something that bothers me that most neurotypical people wouldn’t even notice.
Thinking back to my friend’s situation – my advice would be to think about the fact that people are responsible for their own health. If anyone else sleeps on the sheets, that is their choice. Think about what a neurotypical person would do, and copy that. If a neurotypical person accidentally wets the bed, they may think about germs, and they will change the sheets. Otherwise, they won’t think about germs. Society survives with, and even needs, a certain level of germs. If you are within the boundaries of what a neurotypical person would do, you have done enough. Protecting other people from germs is not your responsibility.
So, in summary, don’t be dismayed if your OCD or your loved one’s OCD persists in the face of advice that would calm a neurotypical person. Sometimes you have to take a different path to the one that seems intuitive to neurotypical people. The more you read about OCD, the more you will learn about what is likely to help you or your loved one. Cognitive reappraisal is a technique which I have found very helpful. This often involves writing down arguments for and against your OCD thought (usually there will be very few arguments on the OCD side!), and reassessing how you think about a situation. The paragraph above, which describes other ways of thinking about a contamination fear, is an example of cognitive reappraisal.
Content note: if you have particular difficulties with contamination OCD or OCD focused on your perceived responsibility for other’s health, read on with caution.
When I was a young teenager a lot of my OCD thoughts were focused on preventing harm to other people. I had a period where I took care to make sure I didn’t cause a scuff on a carpet, in case someone tripped over, banged their head and died. I was very nervous around fire extinguishers in case I somehow damaged them in some way: if there was a fire and the extinguisher didn’t work because I had brushed past it, people might die. My OCD made me feel that these deaths would be my fault.
One way in which I worried about harming others was by eating or touching nuts. When I was a child/young teen I ate peanut butter sandwiches and Tracker bars with nuts in. However over time I couldn’t bring myself to eat them anymore, as I was so afraid of harming someone with a nut allergy. It became too much effort to try to make sure I avoided touching any nuts whilst eating those foods and/or make sure I could wash my hands immediately after without touching anything in the environment.
There was a girl in my class with a relatively severe nut allergy (she had to leave the room when we were burning peanuts in a science lesson – not sure why the teacher asked us to burn peanuts, something to do with energy). However I wasn’t only scared of harming her, I was scared of harming some unknown person who might have a nut allergy. For example, if I touched a nut and then opened a door I might transfer the essence of the nut onto the door handle. If the person who touched the handle after me had a nut allergy, they might die and it would be my fault.
I remember once being very distressed because we were playing a family game that involved passing a console around the group. My dad (and possibly others) were eating peanuts – I think it was a Christmas snack. I was really anxious about touching the console after someone who had handled nuts had touched it. It’s important to point out that I wasn’t going to be seeing any one with a nut allergy that day, or for many days after. It’s still making me feel tense to write about it though, about 16 years later.
I’m better than I used to be with nuts – I can eat peanut butter sandwiches and breakfast bars containing nuts. If offered a nut from a bowl I probably wouldn’t take one though, especially if I couldn’t wash my hands immediately after. Then again I’m not keen on eating food that other people might have touched anyway.
How to overcome this
I don’t remember treating this OCD fear in a direct way – it wasn’t really necessary as it wasn’t constantly interfering with my life like some of the other thoughts were. To some extent it faded naturally as my OCD morphed into other themes.
However, there are two cognitive factors that I’ve found helpful with this kind of compulsion. One is that it falls under the banner of “things that are biologically wrong”. The majority of people’s nut allergies are not so severe that they could be harmed by touching a door handle after someone who had just handled nuts. If they were that sensitive, they wouldn’t touch public door handles, which brings me onto the second factor…
You are not responsible for other people’s safety! Other people are responsible for their own health and safety. Repeatedly reminding myself of this fact has been helpful for me when I get these fears. I’ve built up my belief in this reality over many years, and now I’m towards the edge of the “normal” range of concern for other’s health – just a little more concerned than the average person. I’m happy with that.
As far as I am aware, the concept of a “trigger” originates with post traumatic stress disorder (PTSD) – certain images, topics, smells etc. can trigger flashbacks from the traumatic event(s). As awareness of this concept has increased, so has the use of the phrase “trigger warning”. This is typically used at the beginning of an online post that contains content that could trigger flashbacks.
Over time the phrase has been used more and more, to cover a whole range of things that might upset readers. This has made me think about the OCD triggers that I live with. Some of these are recent, and others have been present most of my life. All of the triggers are connected to my deepest fears, which I discussed in more detail in earlier posts.
Some of my personal OCD triggers include:
the colour red
the colour white
the colour yellow/cream (I don’t have this so much now but it used to represent cancer)
marks on the floor
stepping up or down, stairs
the number 6
the number 3
hearing someone else use “bad” language – this inevitably happens with any word that is or could be used as an insult. Sometimes it is ridiculous – words like “bum” or “poo”, or hearing the word “country” (because it has a bad word within it).
left
right
Christian language – words and phrases
Having OCD often means living with these OCD triggers, in a world that wouldn’t even conceive of them as problematic. My OCD triggers are pretty much always there – you can’t escape the colour red or change the language people use. Even when I have my eyes closed I am aware of left and right.
OCD connections to numbers and colours are pretty common, but they vary between people – a friend with OCD once told me the colour green was “unsafe” for her. For me green is one of the only “safe” colours. The colour blue and the number 2 are “safe” for me – blue is my favourite colour and 2 features prominently in my date of birth. I assume this is why OCD designated them as “safe” when it first began to emerge.
People with OCD aren’t considered when people write their trigger warnings. In many ways this is how it should be – avoiding OCD triggers tends to increase their power. Also, OCD triggers vary so much between people that it would be impossible to cater for all of us – everything would need to come with a trigger warning!
In light of this I usually save the phrase “trigger warning” for PTSD-related contexts. I’m not an expert on PTSD but I know that sexual and physical violence are often at the root of PTSD, so posts about these topics should come with a trigger warning. For other topics which might be upsetting I prefer the term “content note”, with one or two words about the potentially upsetting content. That way it’s possible for people to make their own decision about whether to read the post, but it maintains the original flashback-focused meaning of the “trigger warning” itself.
It’s been a while since I posted, but I haven’t forgotten about this blog. I’m going to write a bit of a stream-of-consciousness post today as a way of trying to cope, but more specific posts should be up in the not-too-distant future.
I was working on a Powerpoint presentation but I’ve had to have a break as my OCD was getting bad. It’s usually there whilst I’m working, but it tends to get stronger as I get more tired. In this case the biggest thing it’s doing is trying to stop me using interesting pictures etc. – the better an idea I have, the more OCD tries to stop me using the idea (i.e. tells me my worst fears will come true if I carry out the good idea).
Today I came across some statistics on the topic of how long term mental health conditions are more common amongst lesbians than straight women. This needs to be highlighted and addressed. However, as a side (slightly selfish) issue the statistic they gave for straight women – 4% – made me a bit sad when I thought about myself. The reason it made me sad is that it emphasised that, at least in the context of other straight women, most don’t know what it’s like to live with constant mental illness for most of their life. It suggests that although experience of mental illness per se is common, mental illness that won’t budge for years and years is not so common.
These feelings played into something I experienced a little while ago when working with a group of people with experience of mental illness. For context, it is useful to know that I am not entirely open about my mental health at work, as I experienced significant discrimination when I took that approach in the past (at a different place of work to where I am now). So within this group of people I was essentially perceived as a mentally healthy person, asking for the opinions of people who have experienced mental illness.
I asked them to look at various images and indicate which ones would be best to represent the work my organisation is doing on the topic of mental health. I had my own personal (private) thoughts about these images – I felt that mental illness was best represented by a picture I found of the brain inside chains, and by other images representing how trapped, crushed and isolated I feel when thinking about my mental illness.
To my surprise the group didn’t like the images I personally favoured, in fact they disliked them. They preferred images representing people, and colourful, positive images. I suspect the difference was partly due to differences in what we were seeking to represent with the images – they were more focused on how our organisation might be represented, whereas I was more focused on how illness itself may be represented. However, another reason for the difference was (unknowingly) expressed by one of the participants – that he would identify with the brain in chains image if he was currently unwell.
The whole situation upset me a bit, because the way I saw it was – even these people who have been chosen specifically for their experience with mental illness are more mentally well than I am. I have since understood this wasn’t exactly what was going on, but it’s a good illustration of the feelings that came up when I read the 4% statistic above.
I often forget to some extent that other people don’t have to live with their worst fears every minute of every day, with no break. That even people with experience of mental illness are not usually ill for years and years. When I remember this it gets me down a bit.
A friend who has been hospitalised for psychosis in the past has recently developed OCD symptoms. They told me that psychosis was easy compared to OCD. It reminded me that it is very hard to live with OCD, and that coping as best I can with almost constant OCD for the best part of 20 years is a big achievement. Those of us with OCD are stronger than most people know.
CONTENT NOTE: As with parts 1 and 2 please take care if you have religious OCD or OCD which focuses on magical thinking (i.e. if I do x then y will happen). However, I hope this post will be helpful for people who have similar OCD thoughts as in this part I will attempt to show why OCD is wrong.
The OCD situation I discuss here is described in detail in Part 2, and the OCD rationale behind it is described in detail in Part 1. In this part I am aiming to show myself (and others with similar thoughts) why OCD is wrong using cognitive reappraisal techniques.
What does OCD say?
I “know” (because OCD has told me) that what I did meant I was insulting the Holy Spirit and the devil.
They can hear my thoughts and know this too. Therefore they will be insulted unless I make it safe.
I used my middle finger because I was intending to insult the Holy Spirit and the devil.
What are the arguments against what OCD says?
OCD is a mental illness. The thought is the symptom of an illness. If I didn’t have OCD I would not have had this thought. OCD is a mental illness which focuses on the things that matter most to the individual with OCD, and the things that cause the most fear to them. However it is a symptom of an illness, in the same way that someone with psychosis may believe they are Jesus, or someone with meningitis may get a rash. The exemplar person with psychosis believes they are Jesus, this doesn’t meant that they are. The person with OCD believes that their actions are insulting to the Holy Spirit or the devil, this doesn’t mean that they are.
Christian arguments against the thought (re. the Holy Spirit). The Bible says repeatedly that God knows everything, He is omniscient. That means He knows that the thought I had was a symptom of OCD, and that I had that symptom specifically because it is the worst thing my OCD could come up with. The Bible also says that God is just – He could not be just and also knowingly condemn someone for the symptom of their illness. Furthermore, the Bible says to test the spirits and see if they are from God, and says that the Holy Spirit is not a spirit of fear. Jesus says “do not be afraid,” and “do not let your hearts be troubled” and that Christians should trust Him, not their fear. This clearly sets OCD up against Jesus and God, OCD is not on God’s side. I believe that God’s only concern with this OCD thought is that it is harming me – He doesn’t see it as offensive to Himself.
Christian arguments against the thought (re. the devil). There is evidence from Biblical scholars that the devil is not meant to be read as a literal individual. Even if we did accept that he was a literal individual who could hear our thoughts, he would know that my thoughts were OCD. Furthermore, supposing we accept that hell is a place where the devil resides – in this case he is still under God’s rule, according to the Bible. He is not “in charge” of hell, according to the Bible. In this manner the power of the devil to harm me would be the same in hell as it is on earth. I am not afraid of him causing me additional harm on earth. This gets to the heart of the fear really – uncertainty and fear of the unknown (in this case death).
Arguments against the notion that I intended to “give the finger” to the Holy Spirit or the devil. This argument won’t work for everyone(!) but I have never “given the finger” to anyone in my life. I never use direct insults at people, even when I’m angry. I rarely use insults when I’m talking about someone I am angry with, even if they are not there. I may have been angry with OCD when I had this OCD thought, but I was not angry with the Holy Spirit or the devil. Even if I had been I wouldn’t have sworn at them. (As an example from UK politics – I was one of the students inspired by Nick Clegg to vote for the Lib Dems, then I watched him triple tuition fees after promising to scrap them. When I met him I told him this but I stayed civil! Like many of those students I haven’t voted for the Lib Dems again, but I digress.)
So after writing all three posts in this series I have done a bit of birthday planning. This kind of OCD thought won’t diminish much until I go against it, so I’ve tried to be brave.
What it's like to have OCD 