Emotional regulation and chronic pain

I came across Ralph after a reader pointed me to his facebook group. Ralph overcame AS and now helps others to understand the psychogenic causes of their chronic pain.

He’s just started a series of videos dealing with various issues, and I was just so excited by what he’s presented in the first one I watched, I had to share it.

I can really relate to this – being unable to differentiate between different types of high and low mood or emotion. I wonder if it’s related to the Melancholic temperament?

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How I overcame ankylosing spondylitis

Reader Stacey asked for an update on my AS and how I’m now faring, so I thought it would be a good idea to do a blog post on my current status and how I got to where I am now.

The disease

It started back in late 2010/early 2011. I’d gotten married and we’d bought a unit, so it was a time of intense and significant changes.

I was working on the unit – cleaning and painting and fixing things – and feeling pretty terrible about it. I’d never thought much about owning property, and with the housing market so difficult to get into, it was a big reality-check to realise we could only afford a one-bedroom unit on a busy road.

The unit was not in good condition, and I was not happy or enthused about moving in. Yet I felt I just had to get it done, put my feelings aside, and just keep going until it was ready.

That was when I had my first bout of iritis/uveitis. I thought it might have been caused by the anti-mould additive I had mixed into the bathroom ceiling paint.

But I tested positive to HLA-B27, an antigen associated with ankylosing spondylitis and other auto-immune conditions. As wikipedia states: “while 90% of people with ankylosing spondylitis (AS) are HLA-B27 positive, only a small fraction of people with HLA-B27 ever develop AS.”

I had recurrent episodes of iritis, and each time was asked if I had back or neck or other joint pain, with the implication that I could expect to develop these symptoms at a later point. Eventually the ophthalmologist referred me to a rheumatologist “just in case”.

I well remember the first time I felt the stiffness and pain in my sacro-iliac joint.

I was sitting in an armchair in our unit, reading some fantasy book on my kindle, and I remember thinking “is this all there is?” Is that what life is all about? We work to earn money, and when we’re not working we distract ourselves with entertainment. That was never the kind of life I wanted to lead, and yet that’s where I’d ended up.

When I got up from the chair, I noticed a dull ache near my hip.

I thought the ache was from sitting in the chair for too long.

By morning it had gotten worse. I don’t remember the exact timeline, but it got to a point where the pain was so severe I could barely walk. I rang the rheumatology clinic and had them move my appointment forward.

I clearly remember taking tiny steps towards the front door of the hospital. It was one of the most intense pains I’ve ever experienced.

The rheumatology registrar cheerfully agreed that I’d developed to the next stage of AS. He put me on celebrex (an NSAID), ordered x-rays, and explained to me the great new drugs available that would suppress my immune system and slow the progression of the disease – a progression that would see my joints slowly calcify.

The celebrex worked well, but the doctor was keen for me to get everything lined up for subsidised disease-modifying antirheumatic drugs.

Being in the public system, I ended up seeing a new doctor each time I went in – every six months. They all had a similar perspective, though some were more diligent and “by the book” and would order blood tests and x-rays, while others would just tell me to come back if anything changed.

Some were keen to get me on the more powerful drugs, while others seemed content to let me just use celebrex as required. I asked more and more questions as time went on, but received slightly different answers from different doctors.

For example, some spoke confidently about what I would expect to see as the disease progressed, while others were more tentative about the actual diagnosis.

Eventually I pressed the issue, and one of the registrars explained that…well given the history – the iritis/uveitis, the HLA-B27, the inflammation in the SI joints, past history of joint pain (my left ankle would get inexplicably inflamed at times), my positive response to the NSAIDS, and the fact that the pain was worst in the mornings and after sitting, all suggested that it was likely to be AS.

Looking for a change

The pain was at its worst in the mornings, and would hurt like hell when I tried to roll over in bed or get up out of bed.

It also interfered with my martial arts practice – most gross movements were fine, but there were occasional moves that would put pressure on my SI joint and remind me that I was still in the middle of a flare-up.

In a weird way, I wasn’t that upset about the disease. Occasionally I thought about the progression, and that really terrified me. I didn’t like taking the NSAIDs because I knew the relief they brought was only temporary – they wouldn’t halt the disease progression.

But still, it was possible for me to ignore the disease in most of my waking life.

I think that’s what got to me in the end. The fact that I wasn’t upset about having this illness when really it made no sense to me. If I started thinking about it, I felt angry and annoyed that my stupid immune system was inflicting this damage on my own body.

I used to believe that this kind of thing had meaning. I used to believe there was a purpose and a direction to life, and having an auto-immune disease was not some kind of random, meaningless affliction.

Besides, other things in life were going quite well. I was reasonably happy, and involved in a lot of activities. Why not take another look at this disease, dig a little deeper, and try to work out what was causing it?

I spent some time looking into the role that stress plays in diseases like AS. The evidence was suggestive, but incomplete. So when I asked one of my doctors if she thought stress could play a role in the disease, she quite truthfully replied that there is no evidence for it.

But as far as I could tell, there was no evidence against it either.

There was evidence showing that people with traumatic childhood experiences are more likely to experience chronic diseases later in life. There was evidence around the relationship between inflammation and anxiety and depression. There was evidence around the relationship between emotional states and inflammatory markers in the body.

But no, there was not yet evidence that stress or psychological factors of some sort might trigger the flare-up of an autoimmune disease like AS.

Absence of evidence is not evidence of absence.

So I decided to revert to a principle I used to believe before I lost my ideals. The principal was that suppressed, unaddressed negative emotions will eventually overflow into some kind of physical manifestation.

Dr John Sarno – requiescat in pace –

I just googled Sarno only to find out that he passed away at the age of 93 on 22nd June this year.

Sarno’s basic premise was that various chronic ailments – starting with back pain – were psychological in origin. Not that the pain wasn’t real, but that the body created real pain to serve a psychological purpose.

With a Freudian perspective, Sarno taught his patients that the pain was created to suppress ‘unacceptable’ emotions. Sarno found that many of his patients were cured simply by learning (and accepting) that this was the real mechanism underlying their pain, while others required in-depth psychotherapy to further elucidate the emotional cause.

I read Sarno’s books, and found them inspiring. Yet I wasn’t one of those who recovered simply by learning about the psychological cause.

I recommend Sarno to anyone with chronic ailments, but with the caveat that my own solution proved to be a little different, or perhaps more nuanced than the books I read would suggest.

I also discovered it was possible to let the search for a cure become a cause of stress in itself.

Perfectionism and emotional themes

Sarno and his supporters identified a set of driven, perfectionist personality traits that seemed to correspond to these psychogenic pains.

The problem is that it’s easy for a driven, perfectionist type of person to become driven and perfectionist about overcoming their illness.

This is made all the worse by the knowledge that some people are cured just by learning Sarno’s theory and accepting it.

Why wasn’t I cured that way? Maybe I wasn’t trying hard enough? Maybe I wasn’t being diligent enough in analysing the emotions behind the symptoms?

I kept looking for more information that developed on Sarno’s work.

Eventually I came across a set of youtube videos by a guy named Richard, who had overcome back pain symptoms very similar to my own (but with a different diagnosis), using Sarno’s theory.

Hearing other people’s accounts of overcoming their pain is always encouraging, but Richard included a timeline of his recovery that showed it hadn’t been instantaneous.

It helped a great deal to know that an instant and complete recovery was not the “correct” result, and that I wasn’t necessarily doing something wrong if I didn’t recover immediately.

I emailed Richard in late 2013 asking for more information and he gave the following reply:

can you trace the pain back to a very first time you experienced it?  the place/circumstances of the first occurrence might give you clues about what the mental issue is.

i do believe it takes some discipline after first hearing about this idea / reading his book to really effect a full recovery, in terms of eg tracking and experimenting with different themes.  in the end i had a collection of several emotional themes, including time deadlines, accomplishment goals, and also mental conditioning issues (eg i got used to feeling pain in the mornings), which could all be independent of each other.

try keeping a journal or notebook to keep track of which themes you get results with, at which times.  you can even write down the themes that don’t really work for you, just to make it even more systematic.  i wouldn’t be surprised if it takes a few weeks just to work out all the issues to see lasting improvement.  it really is like learning a new skill, and just as rewarding.

try not to get discouraged if you don’t effect a full recovery right away, and keep at it.

In the end it actually took me another whole year to work out the specific cause.

Richard was right about the themes. My old notes contain lists of all the sources of pressure or stress in my life, and there was a lot going on at that time.

But there was something specific and nuanced about the flare-ups of AS, and I think that’s why it took me so long to overcome them.

Shifting gears

Following Richard’s advice I had developed a much clearer impression of what a perfectionistic, driven, stressful and intense person I was.

I had also come to realise that I was suppressing the emotional symptoms of this stress and intensity.

There’s a section in my old notes where I rated my pain from AS as 7 out of 10. I then rated my subjective emotional stress as 4 out of 10. But then I considered my objective behaviour – how driven I was and how many things I was trying to achieve, and how often I was thinking about them, and awarded myself 8 out of 10 for this self-imposed pressure.

So, I was under immense pressure, but I felt fine! Great! I just had these bouts of severe pain in my SI joints, and the prospect of a slowly crippling disease ahead of me…

Finally, in the midst of self-scrutiny and observation, I had another flare-up and was self-aware enough to ask what had preceded this specific flare-up.

I had noticed a change in my state of mind, like I had shifted gears mentally. I tried to work out what had caused this shift in gears but couldn’t locate it.

Time went on, and finally another flare-up occurred. This time I knew exactly what had prompted the change in my mind, the shift in gears.

It was prompted by a decision to try freelance writing professionally. I’d written for a few years as a side-interest, but had lost my main job and decided I would give writing a real try.

At that point I made some kind of deeper commitment or decision. I felt like a deeper part of me was assenting to this idea that “from now on, I just have to write. Do nothing but write, and keep writing no matter what.”

I realised that this decision was the trigger for a change in my mental state that was soon followed by a flare-up of inflammation in my SI joints. The change in mental state was characterised by a subjective improvement in my mood, despite an objective increase in self-imposed pressure.

In other words, I located the exact point at which I had agreed to suppress any emotional resistance to achieving my new goal.

Reversing the decision

Having identified the decision that triggered the flare-up, I knew that I had to reverse it, give myself permission to relax and let my emotional resistance resurface.

This was not easy, because the whole point was that I believed “I have to keep writing!” My “just do it!” mentality had a lot of weight behind it.

But all the work I had done to find the trigger for my AS made it obvious that if I didn’t make a change I would just continue to suffer.

I reversed the decision by telling myself specifically “It’s okay if you never write another article in your life.” And “It’s okay if you are poor and unemployed for the rest of your life”.

These are things that I felt were manifestly not okay! But that’s exactly why I had to accept them.

I could feel my internal resistance to these thoughts, but I could also feel a kind of relief, a letting go of tension that I hadn’t been conscious of.

It really is okay if I never write another book, article, or blog post again in my entire life. It’s completely okay.

It’s okay if I never amount to anything in life. It’s completely okay.

Relief!

My SI pain went away as I progressively reversed the decision. From memory there were one or two subsequent flare-ups, but they were milder and I caught them early, reversing the relevant decisions behind them.

One final mistake

I didn’t make a big deal of it in my notes. I keep looking for the bit that says “Yes! Solved it! No more pain!” But it’s not there.

The reason is that in between flare-ups I had developed a different kind of pain in my lower back. This pain didn’t flare-up, it was continuous. I felt it in the mornings when I got out of bed, and occasionally triggered it when my back was under strain.

I spent a lot of time trying to overcome this back pain in the same way that I had overcome my SI joint pain, thinking they were the same thing.

Dr Sarno always insisted his patients undergo medical examination prior to utilising his psychogenic theory. The point was to rule out other causes of the pain.

I assumed my lower back pain was another symptom of AS, that it was psychogenic, and caused by stress.

But eventually I discovered the lower back pain was purely mechanical. It had developed as I tried to physically compensate for my SI joint stiffness – my lower back started to bend more and more to take pressure off my inflamed SI joints.

Conclusion

So that’s how I overcame my AS. I haven’t had a flare-up in 2-3 years.

I think the main lesson from my experience is that some people might have to specifically reverse key decisions in order to neutralise the stress and hence the pain.

I hope this is helpful for some of you with AS or those following Sarno’s theory on psychogenic pain and illness. I’m grateful especially for the late Dr Sarno’s work, and for Richard’s advice that really helped me become more systematic and narrow-down the precise cause for my pain.

Miracle cures and short-sightedness

I’m in my second day without wearing glasses, because I want to cure my myopia.

If that sounds bizarre, let me explain.

The miracle ‘cure’

I’ve always been both hopeful and skeptical about the prospect of ‘miraculous’ cures for physical illnesses and ailments.

I use the term ‘miraculous’ loosely to refer to cures that do not match our normal expectations for how health and illness work.

So, for example, I can quite honestly say in one sense that I ‘cured’ my autoimmune disease. My honesty makes me put ‘cured’ in quotation marks because I don’t have sufficient evidence to prove that what happened to me amounts to a ‘miraculous’ recovery from that disease.

In practical terms, I no longer have symptoms of that illness, and I have a subjectively meaningful narrative for how those symptoms came to an end as a result of my own actions.

My rheumatologists were quite happy to give me a provisional diagnosis of ankylosing spondylitis based on my symptoms and a genetic marker. The only caveat is that if my symptoms stopped, then obviously they would withdraw the diagnosis.

A skeptical contention would be that if I hadn’t done anything to change my outlook on the illness and seek some kind of psychological cure to the physical problem, the symptoms would have disappeared anyway.

It’s impossible to prove in my case, and it’s hard to imagine an appropriately rigorous medical trial to test the theory (hard but not impossible).

So for me it remains a choice. I had to choose to face my illness as a reflection of a deeper psychological or spiritual issue. In so doing, I observed a pattern to the symptoms that matched changes to my mental and emotional state. When I became aware of these changes and adapted them, the symptoms ceased.

A short-sighted approach

So what about eyesight?

I’ve been short-sighted for a long time. I had my eyes tested in about year 5 at school, but I may have suffered from short-sightedness before that.

Wearing glasses has always bothered me. I don’t like being so dependent on a fragile external tool to interact with my environment. So when my glasses frame broke two days ago I decided to take the opportunity to investigate the problems with my vision.

Meditation on illness

Both auto-immune disease and short-sightedness  relate to extraordinarily complex biological systems.

An auto-immune disease is a good candidate for examination because it consists in essence of the body attacking itself without an obvious external cause.

But it turns out that myopia is also somewhat mysterious, with both hereditary and environmental factors at play.

Myopia is a form of refractive error due to the shape of the eye. I have trouble seeing long distances clearly because my eye is longer than it ought to be.

I don’t know about you, but my response to being told “your body’s immune system is attacking your joints” and “your eyeball is too long to focus the light properly”, is a profound and indomitable sense of challenge.

The spiritual approach

For want of a better word, let’s call this a ‘spiritual’ approach to illness. The idea is that our experience of life is not simply the random outcome of external processes. Rather, our experience of reality is mysterious and meaningful.

What this means is that something like suffering an auto-immune disease or having bad vision is not an accident or a random outcome. It has deeper significance. It relates to your life and your own person as if you were a character in a story.

Whether we continue to suffer from the illness, or find reprieve, I think it makes sense to try to see the personal meaning in it.

For me this process of looking for meaning begins with observing how I feel about the illness, the symptoms, and their impact on my life.

It turns out that despite not giving much thought to my short-sightedness for many years, I do carry strong feelings about it.

Going for two days without my glasses has made me realise how much fear and powerlessness I feel when I can’t clearly see what is going on around me.

Driving without my glasses is safe enough – I can see every object in my vicinity – but more than a hundred or so metres away and objects become blurred. People are easy to see but impossible to recognise. They become fuzzy humanoid shapes, obvious but unreadable.

The inability to see what’s coming right to the farthest horizon or the very end of the road is fear-inducing. I can see things but I don’t know what they are.

Then there’s the powerlessness. I can’t look down the aisle of a supermarket and read the signs for the food categories anymore. I have to walk towards things to make out exactly what they are. And as for people – they might as well be dressed in shrouds and wearing masks until they come within about five metres of me.

It’s a profoundly alienating experience.

So there you go. This short-sightedness does have a great deal of meaning for me, a meaning I’ve ignored and neglected by wearing glasses all the time.

I don’t want to wear glasses anymore, and that means I have to start confronting and facing these fears and insecurities.

So what am I saying?

Does that mean if I confront my fears and anxieties my eyes will magically change and I’ll be able to see without glasses?

Well, what I discovered when I tried to heal my auto-immune disease was that I had to accept the truth about the disease first. The truth was that my disease was just a reflection of my own psychological and spiritual state.

I know how challenging that sounds, because I resisted accepting it for a long time. I didn’t like the idea that progress would depend on choosing to believe something. If the evidence could convince me, I was ready to believe it. But to just believe, without evidence? That sounded pathetic and weak.

Yet there was evidence. Not evidence that could convince me this was the truth, but evidence that I could make no progress, do nothing more, until I had accepted this basic premise.

To put it bluntly, if my disease really was just some random or genetically determined biological quirk, then I was ******.

If my symptoms weren’t a reflection of my deeper psychological and spiritual state, then there was nothing I could do about it. But if they were a reflection, then nothing was set in stone.

In the end that was the choice: the choice to try to give up or try to find answers.

And if there’s one thing I know from my studies and reading in philosophy and mysticism, it’s that our claims to absolute knowledge of external reality are as much a choice as any.

We choose to believe the world is real, not because we have seen convincing evidence that it is real, but because we have seen evidence that to choose otherwise gives us nothing in return.

If I choose to believe the world is a figment of my imagination, there is nothing anyone can say or do to prove me wrong. But there is plenty that can be said and done to prove that a real world is a much better thing to believe in than a deluded imaginary one.

A painful attitude

Last week I mentioned Dr Sarno’s work in the context of my auto-immune disease and the intermittent flare-ups of pain and stiffness it brings.

My experience matches others’ accounts of the link between their pain and their broader psychological state: my pain seems to be associated with a self-imposed pressure to perform, to go faster, to get more done, or to be more responsible, more in control.

Sarno’s theory is that such expectations enrage us on a subconscious level, and we create the pain to distract us from what we consider to be inappropriate emotional responses. I’m not sure if this mechanism applies fully to my circumstances, but the expectations definitely play a role.

For example, when I lost my job a year ago I decided to see how far I could push my freelance writing. Things were going well for a few weeks, I felt confident and had dramatically increased my output. Then the pain set in. I ignored it for as long as I could, and in hindsight it’s remarkable that I managed – or wanted to – ignore it at all.

Eventually I realised what the problem was: at some point I had quietly decided that the solution to my employment problems was to write prodigiously and without ceasing. “Decided” is perhaps a bit of an understatement; it’s more like I subconsciously committed myself to that path, with a determined disregard for the consequences. It felt like a gut-level conviction that “This is what I have to do.”

Altogether it took a few weeks from the onset of the flare-up for me to stop ignoring the pain, remember the general psychological theory, work out the specific cause, and reverse it.  In this instance, fully reversing it meant recognising that the amount of work I was doing was not sustainable in the long-term, that the amount of money we needed to survive was much less than I had expected, and that imposing such pressure on myself was simply counter-productive.

I’ve found that this method neutralises the acute lateral pain of a flare-up so long as I genuinely reverse the underlying attitude. However, the long-term medial stiffness and occasional pain has not been responsive to these efforts. I’m working on a resolution for these chronic symptoms, but will have to save it for a later post.

‘Overcoming’ Auto-immune disease

I was diagnosed with an auto-immune disease about five years ago. Since then I’ve intermittently tried to comprehend the cause and etiology of the disease, necessarily going well beyond the limits or context of scientific research.

While there are various studies showing interesting links between aspects of psychology (for example, childhood trauma) and chronic illness in later life, there is a dearth of solid research saying “Zac, this is why you suffer from the immunological analog of punching yourself in the face.”

I’m mostly unapologetic about delving into the kinds of material that some might describe as “new age horseshit” but at the same time I’m increasingly weary and wary of those who accept uncritically the assurances of wealthy, slickly marketed gurus whose message of love, peace, and healing is now available in downloadable format for the one-time offer of $29.95 (monthly subscription).

You only have to look at the most prominent of these new age scions to realise that they show all the signs of being Choleric by temperament, which, in the context of a charismatic marketing campaign based on literally telling sick, sad, and suffering people exactly what they want to hear, does not guarantee that they are frauds, shysters and snake-oil salesmen.  But it does suggest that the supposedly Divine, Transcendent Life-Force or Energy Welling Up From Deep Inside Them™ and inspiring their benevolent mission of love and peace to all humanity looks and sounds a lot like their own ego.

Nonetheless, I can’t afford to wait for scientists to unravel the mysteries of our physical makeup, and the same desire for understanding that led me into philosophy and the study of religion leaves me pretty damn open-minded about the theoretical basis for a pragmatic approach to health and sickness. In other words, if someone wants to argue that the body is a holographic projection of the mind, I’m open to it. But if believing this does nothing, then it remains just an empty possibility, and I have no use for it.

One theoretical context that has provided some value is the work of Dr John Sarno, who came to prominence some decades ago for arguing that many forms of chronic pain are a biological response to an emotional or psychological cause. Coming from something of a Freudian background, he argued that the pain was real, but it was caused by the brain attempting to distract itself from emotional turmoil. Sarno believed that this chronic pain could be overcome simply by accepting its true cause, effectively seeing through the brain’s attempt at self-distraction.

This is only a rough summary of the theory and associated methodology. It is not a broad theory, in the sense that Sarno accepts the legitimacy of genuine physical injuries, diseases, and illnesses; he merely wishes to add this particular syndrome to the panoply of diagnoses and hence treatments. I do not think, for example, that my condition is discussed in Sarno’s books, or if he considers autoimmune conditions to be an expression of the same mechanism.

So if you read something like this sincere account of a person’s struggle to overcome an autoimmune disease by confronting underlying emotional trauma and consequent psychological self-abuse, you can hopefully look past any confusing or confronting references to “new age” themes, and see that he is describing roughly the same underlying mechanism as that proffered, to greater mainstream acclaim, by Sarno.

I’ve mentioned previously in the context of temperaments that the melancholic is prone to physical ailments, and also that the melancholic must, according to Conrad Hock, learn to love suffering. While I’ve interpreted this previously as a brake against the forces of perfectionist idealism, the account above presents it as a means of reaffirming the feeling faculty at the heart of the melancholic temperament.

As the author describes:

My physical healing process began when I realized that tensing against and resisting my severe physical pain was itself a form of stress that added to my illness.

In a similar way, I’ve wondered if even my attempts to root out and uncover the causes of my illness are paradoxically contributing to the stress and intensity that drive it? The further paradox might be that this disease is not something that you overcome, since the illness itself entails confusion over where exactly ‘you’ begin and end in the first place.

If I take my chronic auto-immune disease as a kind of gestalt image of my life in the world, then it is clear that something is not working.  But that I would feel ‘fine’ if not for the pain and other symptoms, tells me that I am missing something more subtle, more profound, or just very deeply ingrained. It may even be, as the author attests, Sarno suggests, and the life of a melancholic implies, that I have learned to function at odds with my own nature.