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Pernicious Anaemia and the Pain from the Misunderstandings of Others

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A little while ago, I wrote about the deleterious effects that pernicious anaemia has on the physical body and the mind of those who suffer it. I wrote of my own experiences  about how it masquerades as all manner of different illnesses and how, as a result, some  people suffer for years before a proper diagnosis and eventual (sometimes very poor)  treatment. Now an alert: what follows here might be distressing to some, since it tells of  unpleasant and seldom or never publicised truths. 

In addition to the physical symptoms, there’s a darker and often more distressing side to pernicious anaemia which, as a reminder, is totally incurable and when you have it, it’s for life. That darker side originates in the fact that a sufferer usually doesn’t look ill at all, so much so that until it’s diagnosed, many, maybe most, are told over and again that they actually look quite well and have it repeatedly suggested that either: (a) it’s all in their head, and they’re  actually just neurotic (or a ‘head case’); or (b) they’re attention-seeking; or (c) they’re trying  to somehow get out of going to work like every normal person has to. It’s actually very difficult  to explain the pain of knowing you’re severely ill and believing you are dying while loved ones  look at you sideways and wonder what’s really going on. Or perhaps, instead of wondering,  they decide there’s actually nothing going on and then become irritated because they believe  you’re making it all up for reasons best known to yourself. What often follows that is decidedly  odd and even more uncomfortable – guilt arising from the fear that they may be right and  there’s nothing really wrong other than a case of ‘nerves’. Self-doubt is not uncommon for  sufferers of pernicious anaemia. 

Perhaps the biggest problem is that the stress and anxiety created by those reactions of others while knowing beyond doubt that there’s something dreadful going on in your body seriously depletes whatever B12 you do have left and so the symptoms multiply and accelerate. It’s a  quite horrid vicious circle from which it feels like there’s no escape. So, in the end, you stop  talking about it and everybody assumes you’re getting better. But you’re not. 

You might imagine that things get better once it’s been diagnosed; but you’d be wrong, most  of the time. When you tell others that it’s pernicious anaemia, a common response is along  the lines of ‘Oh, anaemia. OK get few iron tablets down you, and you’ll be fine.’ Trying to  explain that this is not iron deficiency but vitamin B12 deficiency doesn’t help at all. And if  you say that this is a life-threatening illness, just hearing ‘Well take your damn vitamins  then’  is exasperating, because you cannot ‘just take your vitamins’ because you cannot  absorb them. They have to be given to you via a needle into a muscle, or you have to  somehow muster up the courage to stick the needle into yourself. Easy enough once you’ve  done it a few times, but that first time…

But that’s only the surface of it. While ‘stuff’ like these are going on, and before you’ve managed to get what is usually only a semi-permanent stability from B12 administration (which is a slow process) there’s a whole gamut of symptomatic work wreaking havoc with your psychology. Things you don’t talk about because you don’t want to feel the reactions of  others: unrelenting tinnitus; depression coupled with anxiety; pain that you can’t quite locate in your body but is probably in your gut, or your back, maybe. And then there’s that readiness to tears for  absolutely no reason you can think of, and the uncertainty as to whether your feet feel numb, or if it’s ‘sort of’ pins and needles. Maybe with real needles. Then there’s the nausea that strikes just as you’re about to try and eat something, or the sudden need for the loo. And lying in bed staring at the ceiling, wracked with fatigue and tiredness yet not being able to sleep. And there’s that balance problem that has you occasionally shoulder-charging doorways or  bashing into corners or legs of furniture with your hip, knee, or ankle. And that’s without the  occasional self-recrimination that creeps in to have you believing that you somehow brought this all on yourself. Or perhaps just that you’re going mad. 

None of the above is extreme, rare, or unusual. It is, in fact, commonly the life of an individual with pernicious anaemia before diagnosis; and it is sadly rarely the case that once treatment has started everything soon returns to ‘normal’. It happens but not very often, since there are always plenty of reminders that something is wrong, and the older you get, the more  reminders there are. The majority of people experience the occasional ‘crash’ where it’s as if  your bodily store of B12 has emptied overnight. There’s no mistaking it and if you’ve learned to inject yourself, you can sort it out by increasing the frequency of injections. But if you’ve  not acquired the art of stabbing a needle into yourself on a regular basis. Well, you’ll just  have to stay ill until your next scheduled injection, because you won’t get any help from your  GP (that’s not a criticism, by the way, they just don’t receive sufficient training or information about the illness and tend to believe that it is far rarer than it actually is.) 

There’s one more symptom that everybody experiences at some point, though the lucky ones sometimes find it subsides with their regular injections. It is the belief that you’re dying. It’s  both profound and unshakeable, and there’s probably a good reason for this, though it’s  really only a hypothesis. It is this: your autonomic nervous system (ANS) manages your health in the background, 24/7. The changes in your body include not just the absence of vitamin B12, but also enlargement of the red blood cells, when they then cease to carry oxygen as efficiently as they should, indicating to the ANS that there’s a serious malfunction. The subconscious recognises the alarm message from the ANS and perceives that death is near. The problem is, it doesn’t recognise that the synthetic B12 we inject mitigates a lot of the  danger (though not all, because among other delights, we are at around four times the risk of  stomach cancer.) 

Now, this hasn’t been a very cheerful or uplifting, because there is very little that is  cheerful or uplifting about this illness. But it is a fact that with support and understanding from loved ones, and the ability to get their injections regularly – as well as other supplements like folic acid and magnesium, to name just two – most people with pernicious anaemia can live a reasonably comfortable life and be cheerful about it. And, for the record, I speak from experience. 

Terence Watts is the creator of Brain Working Recursive Therapy (BWRT).


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