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.

Autoimmune and Myopia – parallels

When I had my autoimmune disease I felt great.

Let me put that in perspective.

Before the disease, I’d suffered from a kind of chronic state of anxiety and depression, coupled with a sense of disorientation and…well it’s hard to describe, but imagine knowing you have to do something vitally important, but having no idea what it is. Live with that for long enough and it doesn’t go away, it just turns into a sort of dull psychosomatic ache.

The primary cause of my autoimmune disease was mental. I reached the incredibly bitter conclusion that I’d been wrong about life, that life had no meaning and no purpose, but my desire for meaning and purpose had harmed me on the only metric that counted: money.

My obsession with meaning had stopped me choosing a normal path in life, where I could have found some kind of career and made a reasonable amount of money. Life would be meaningless either way, but at least I could have endured the meaninglessness in a nice house instead of a small unit.

Once I concluded there was no meaning to be found in life, I actually started to feel better. I felt immediate relief from the symptoms that had plagued me for years. I’d finally dismissed the idea that there was a meaningful path to follow, so I no longer felt the desperate need to discover that path.

In fact I no longer felt anything much at all. And feeling nothing was pretty good.

If it hadn’t been for the growing immobility of my SI joints and the recurrent bouts of grinding ache and pain, I would have been pretty content.

It was thanks to my autoimmune disease that I finally clawed my way back onto the path, and rediscovered meaning in life. I couldn’t ignore the pain, and I couldn’t pretend that an autoimmune disease was something imposed on me by a blind, external reality.

So I started investigating it. I knew that I had been better off feeling meaningful misery than meaningless pain. I retraced my steps from a dull world where only money and comfort mattered, to the world I once knew – the one where I had rejected a normal path in life in favour of finding answers.

In practical terms that meant I wanted to cure my autoimmune disease. It took a lot of work, a lot of fruitless investigation. But finally I realised there were two main components to the disease.

First, it had suppressed my usual unpleasant feelings of needing to strive for some unknown goal.

Second, each flare-up was triggered by a change in my mental state, a kind of decision to focus, be more intent, and drive myself unrelentingly toward a particular material outcome.

So in order to reverse the disease I had to do two things.

I’ve mentioned in the previous post that I had to reverse the decision. I had to accept that the desired material outcome might never occur. I had to consciously embrace failure. That was the only way to stop that incredibly rigid, driven state of mind. It was the only way I could genuinely relax.

And then – counterintuitively – I had to return to those unpleasant feelings. I didn’t know if they were final, or what meaning they had. But I knew from experience that they had predated the autoimmune disease, and had disappeared when the disease first emerged.

I suspected the main cause of the disease was having suppressed those feelings, replacing them with mundane material goals.

So I tried to find those feelings again. I remembered what they were like, and although they were deeply unpleasant, I knew that they were more real than the false contentment that had come with the disease.

Myopia

If the autoimmune disease parallels myopia, then the same two principles might well apply.

Firstly, there may be a negative emotional state that was suppressed with the onset of myopic symptoms.

Second, there may be a definite decision – a change in mental state that corresponds to the suppression of those negative emotions.

Unfortunately my myopia set in long ago. I don’t have strong memories of how I felt before the myopia, and I don’t even have a clear timeline of when the symptoms emerged. I didn’t know I was short-sighted until I had an eye test.

But I do have more general memories. What I will try to do next is to see how those general memories correspond to the emotional resonance of the myopia symptoms. In other words, what is the biographical significance of the emotions that arise in connection with my short-sightedness?

Likewise, what kinds of decisions might I have made as a child or young teenager that correspond to the significance of myopia symptoms? What decisions might resonate with poor vision, or might appear to justify myopia as a kind of trade-off?

If my autoimmune experience is indicative, I should expect to feel a lot worse when those old feelings resurface. But it’s better to feel them than to blindly suppress them. A more meaningful life isn’t necessarily a more pleasant or easy life, but it is definitely worth living.

Looking for answers to refine your search

So I’ve described the first step in understanding the psychological/emotional issues that correspond to a physical illness or ailment.

It’s not a quick or easy step to take, but you have to start somewhere.

Looking at the emotional aspect of the illness is like entering a whole new domain that you’ve hitherto ignored. It’s no surprise you’ll take time to refine your understanding of it.

What I’ve done in the past with my autoimmune disease is to start searching online for people having similar thoughts. I tried it again, looking at myopia in the context of fear and vulnerability or powerlessness.

Two of the results were relevant to my search:

http://www.flowsandforms.com/myopia/

http://www.visionsofjoy.org/pdfs/Myopia-As-An-Adaptation.pdf

Neither of them is exactly right for me. That’s not the point.

The point is that they offer alternative perspectives that help me further refine my own search.

They also identify things like tension in the neck and eye muscles that definitely apply to me, but would not necessarily have come to my attention.

I went through this same process of searching for relevant information and insights with my autoimmune disease, and while I had to find my own answers in the end, it did help to have similar but different materials to draw on in my search.

I agreed with other sources that said perfectionism, stress, and a driven mentality were the cause of the pain I suffered, but I still had to find the exact combination and iteration of these qualities that triggered the flare-up of my symptoms.

Once I identified them, I was able to reverse them, by consciously accepting all the negative potential outcomes that were motivating my driven state of mind in the first place.

For example, the stress corresponded at one stage to thinking I had to do nothing but write articles. I was so focused on writing articles, I could feel my mind shift into a different mode.

The strangest thing was that it felt really good. Probably because it involved blocking out and suppressing all fears and doubts.

To overcome this state of mind I had to consciously accept that I might never write another article again in my entire life and that would be ok. I had to accept that I might live in poverty and obscurity, devoid of achievement, and that would be ok.

Obviously these were painful thoughts to accept, but accepting them neutralised the intensity that had caused my joints to become inflamed as my immune system attacked them.

I don’t know if I can make an exact parallel with myopia, but I’ll continue to examine it until I understand it as best I can.

 

The eyes have it

So it’s day four without wearing glasses, and overall I’m really enjoying it.

But I still feel like I’m only just beginning to grasp how significant my visual impairment has been.

Yesterday a friend asked me how I would approach health issues from a psychological/spiritual perspective. Using eyesight as an example, I told her I would begin by examining the emotional impact and significance of the condition itself and its symptoms.

For instance, having poor eyesight makes me feel fearful and vulnerable in my interactions with the outside world, because I become aware of things – seeing them in their blurred form – long before I can recognise them, or in the case of humans, discern their intent from facial cues.

Poor eyesight also enhances my sense that there is a world “out there” which I imperfectly perceive. This leads to a near-constant sense of doubt about my perceptions and my judgements.

I feel as though other people are quicker or more astute than me, because they see things and recognise them before I do.

Overall I’m left with the sense that I am better able to deal with things in close proximity to myself. That means I have a tendency toward introversion and introspection, as well as activities like reading and writing.

Inversion

So that’s a brief summary of the apparent psychological side-effects of this illness or impairment. The trick now would be to invert cause and effect, to consider the magnitude and depth of these psychological phenomena as potential causes of the physical condition.

The heuristic approach is that our physical impairments are by and large a reflection of suppressed or ignored psychological conflicts and suffering.

Let’s say you feel afraid, but for various social and cultural reasons you can’t express that fear. Being unable to express it, the fear cannot be resolved.

Eventually a physical problem emerges that demands your attention, demands a resolution. In the case of myopia, short-sightedness emulates and reflects the suppressed emotional conflict or suffering.

We try to address the physical impairment with medical interventions including corrective lenses. But in the case of corrective lenses the intervention is merely a crutch.

The lenses don’t overcome the underlying fear, they actually help suppress it further. The glasses become a necessary object, they become imbued with protective power. You can’t get by without them, and when they break or you lose them…you feel afraid and vulnerable once more.

Healing

Looking at an illness or impairment in this light is instructive. But we also need to consider the age of onset, the severity of the condition, how long it has been endured, and so on. All of this information offers potential clues to identifying the psychological cause.

I assume this approach doesn’t hold the answer to every single illness and impairment. And it doesn’t necessarily mean that every such impairment or illness will be reversed. But at the very least, it can help us to identify and resolve the psychological and emotional conflict that lies behind it.

If I had laser eye surgery tomorrow, my vision might be perfect. But that would still leave me having to adjust to a new experience, a new way of being in the world. It would be a little like becoming a new self, and if you think the psychological landscape behind it would just quietly reform, I think you’d be disappointed.

As for me, I’ll have to examine the nature and origin of the fear and vulnerability that accompanies this impairment in my vision.

To that end, the impairment itself can always provide further clues, not only in terms of how we feel about it, but the significance of its effects. It is significant, for example, that myopia would prevent me from seeing certain things. For all that short-sightedness impairs our vision, it also protects us by creating distance from the external world.