Long Covid & OCD

(5 minute read)

Please excuse my recent extended absence, it’s been a fairly trying month, and I will delve more into the details of why at some point, but right now is not the time. It’s a story that involves a lot of pain, a lot of disbelief, and 8 days of meditating 12 hours a day.

Maybe another time….

Anyway, I wanted to share something that may resonate with some people.

Being ‘obsessed’

For as long as I can remember, I’ve had rather a tendency to become obsessed with whatever happens to take my interest at the moment in time. Judo, birds of prey, cigars, philosophy, golf - I do everything to the extreme.

I won’t just develop an interest in philosophy, I’ll read everything from the Qu’ran to John Stuart Mill cover to cover and watch 12 hours of debates a day. I won’t simply enjoy a cigar, I will (much to my girlfriend’s delight, of course) buy a full humidor, stock it to the brim and purchase historical books on cigars.

Some may say this is unhealthy, but this is unashamedly me. And whilst in many ways I see these tendencies as a superpower, it can be a little more destructive in others.

I think of myself as quite a rational thinker, I usually can produce clear, cogent arguments in my head, and form some degree of solid conclusion. I however also tend to question such a conclusion and its validity, despite rationally knowing it is correct.

Since developing Long Covid, I’ve noticed this rumination become more and more intense. It comes in waves where it seemingly latches on to a particular worry, and despite my best attempts to ‘rationalise’ my way out of it, the thought becomes ever more stuck.

Will I ever recover?

A common example would be that around recovery. When I’m entering a more challenging period of symptom flare-ups, I often get the thought that I will never return to a former baseline. I will then engage in a desperate rationalisation of why, statistically, like every crash before, I will most likely return to my former levels of health - yet for some reason this still doesn’t seem to stick.

More recently, such mental rabbit holes have become more and more intense, leading me to engage in more and more mental gymnastics and create more and more suffering. The more I engage in such rationalisation, the more I feel doubtful, and the more my brain becomes fried from the exacerbated brain fog thanks to elevated levels of worry, hyperventilation and thus reduced blood flow.

The cause, it seems, is Obsessive Compulsive Disorder.

What is OCD?

Most people (as I did), think of marigolds, anti-bac and perfectly aligned pencils when they think of OCD. There are, however, many other forms of this naturally occurring form of mental torture.

There are too many to go through, but the one that seems to affect me most prominently is known as ‘pure-O’.

OCD presents as an obsessive ‘thought’, that then leads to a ‘compulsion’ in an attempt to provide immediate relief to that sense of discomfort. Now, for those with thoughts of ‘if I don’t clean this surface I’m going to catch HIV’, the compulsion would be to clean. Maybe for others, it is to tap your fingers in a certain routine, but for ‘pure-O’, this compulsion is an exercise in mental rationalisation and reassurance.

Take my ‘I will never recover’ example for instance.

For many, this simple thought is just that, a thought - something that comes and passes as nonchalantly as the thousands of other thoughts that occur throughout the day. For me, however, it seems to send a dagger of pain and anxiety through my chest, something I would do anything to rid myself of.

To do so, the ‘compulsion’ into which I enter is one of the following:

1. I will immediately distract myself to try and avoid said sensation

2. I will reassure myself ‘No, you will get better again!’

3. I will enter some rationalisation as to why others have recovered, why I’ve been seeing progress etc. and why that means that I will recover in the future.

Interestingly enough, none of these seem to help in the long term!

Now, from what I’ve learned, it seems that such compulsions are just that, compulsions. And rather than helping, they seem to feed the beast.

As someone who is not an expert in this field, I won’t try and delve too much into why all of this occurs, the precursors etc. but I will leave a couple of books that have been fantastically helpful to me below.

Overcoming Unwanted Intrusive Thoughts - Sally Winston

What Every Therapist Needs to Know About Anxiety Disorders - Sally Winston & M. Neif

I found it rather despairing to think that certain thoughts can have such a monumental effect on me, not to mention the exacerbation from these endless Long Covid symptoms that constantly afflict my body.

But it seems the answer is fairly simple, and it is not to control the thoughts, but how you react to them.

How to treat?

Again, I am not a psychiatrist, and a thorough explanation of what this technique is and how to be applied is best demonstrated by a trained therapist, but ERP or (Exposure Response Prevention) is the gold standard CBT treatment for dealing with OCD. It involves actively inviting such thoughts, sitting with them, and becoming comfortable in their presence.

Here is how it looks in my case

1. The inevitable ‘I’m never going to get better’ thought pops up

2. My instinct is to avoid, reassure or rationalise as to why this is not the case (the compulsion)

3. I sit there, somewhat separated from the thought, and simply observe the thought and the sensation that it produces

4. I then in fact buy into the thought even further - what if I don’t ever recover? Maybe I’ll in fact get worse?! Maybe I’ll actually develop horrible great purple spots all over my body?! Note: This sounds absurd, and that’s exactly the point. Thoughts are just thoughts - thinking ‘bad’ thoughts doesn’t increase the likelihood of something happening, as horrible as they may feel. When your brain is constantly exposed in a positive frame of mind - the thoughts lose their ‘stickiness’

Over time, I find myself genuinely becoming bored with the thoughts, and this is exactly the point of ERP, a treatment which is shown to be effective in 80% of people with OCD.

I know that many of you may be thinking, what relevance has this to Long Covid? And you might be right, but I wanted to share as it’s something that has provided me such relief in recent weeks, and the more I speak to other sufferers, the less rarely it seems to appear.

In fact there are studies demonstrating that those with ME/CFS are 25x more likely to also have OCD - something that ought to be studied more.

ERP vs. ‘Somatic Tracking’ for Chronic Pain

More interestingly, the technique of ‘somatic tracking’ that I so often talk about as being used to help treat chronic pain, is essentially just ERP for the body and its sensations. As discussed in the book ‘The Way Out’, they successfully treated huge numbers of individuals with chronic back pain, utilising the technique of observing bodily sensations and pain, all with lightness and objectivity, allowing patients’ nervous systems to become more desensitised to their pain.

As I always say, Long Covid & ME/CFS seem to be different, with potential viral, inflammatory and autoimmune causes. But utilising these techniques for my brain and body has brought immense relief to my suffering, because whilst we cannot always control of the sensations our bodies throw up, we can learn to control our response to them.

Hope this was useful to someone, and as always - please let me know of any feedback in the comments!

P.S. I hope this isn’t interpreted as a need to self-diagnose oneself with another condition, and nothing can replace a diagnosis from a trained medical professional. I’m simply sharing my experience as it has brought me tremendous benefit to understand why my mind behaves the way it does, and my own personal inklings on some parallels that might be drawn between the two conditions.