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Pernicious Anaemia: The Hardest Part Comes After Diagnosis

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Staying alive after you’ve been diagnosed with ‘PA’ – pernicious anaemia – is relatively easy. It’s actually enjoying living that can be the hard bit. 

It’s not just trying to come to terms with the fact that you now have an incurable illness with many varied and excruciatingly uncomfortable symptoms that flare up without warning. It’s not even the fact that those around you expect you to somehow bounce back to whatever ‘normal’ used to be for you before PA struck. It’s both those things plus your own psychology which is temporarily shocked into despair by the discovery of the first two. But there is much you can do to improve your life (and, incidentally, those of the others around you) and that’s really what this article, my third on the subject, is about.

One of the most important facts to grasp is that this is a lonely illness, because no two sufferers will experience identical symptoms. These vary from one sufferer to another and frequently have a quality or physical sensation which there are no words to adequately describe. There’s also the brain fog, feelings of doom, readiness to tears for no reason, irritability with no provocation, unfounded anxiety, frustration at the lack of understanding of others. But potentially the most damaging reaction to all this is to continually reflect on the way you used to be. Mourning the loss of your old self every day prevents you from being able to focus on being the best self you can be under these new circumstances. So, get focused on the right direction, and you will begin to discover a life that is definitely different but no less satisfying than the one you used to have!

There’s an important aspect of all this to fully ‘take on board’ that you might have to think about for a moment or two: You have an incurable but totally manageable illness that you should hope to have for a very long time.

OK, that’s the background, so now let’s get on to some life improvement stuff.

Don’t wallow

Now, if what you read in this section irritates you, it’s not because of PA – it’s because it’s near the truth, and sorting it out is one of the most important and beneficial changes you can make. You’re going to read about what is probably one of the most damaging of psychological processes, and something I used to work with on a daily basis during my years as a therapist. It is the secret enjoyment of having something wrong with you that cannot be refuted, a vicarious pleasure from being tragic. Be pleased if you don’t have this problem – and if you do, keep quiet about it while you sort it out! Here are three important facts:

  • You might secretly like people feeling sorry for you, but most get fed up with it after a while, even if they say otherwise. It doesn’t make them love you more.
  • If you even only slightly enjoy the illness, your brain will seek to make it worse.
  • By determining that you are going to become somebody who others admire for just getting on with life when you’re ill, you programme your brain for positive change.

That third point is of enormous importance. If you can inspire others to overcome hardship and discomfort and just get on with finding the best life possible, you will be turning a setback to an advantage. You will be making an important change in the world. And the best bit about it is that all you have to do is think of inspiring people instead of having them feel sorry for you and your brain will do the rest. The reasons for that are too complicated to discuss here but it’s a sound concept and something that I’ve taught – and still teach – to many people, and it has never failed yet. 

Dealing with the others

‘The others’, here, refers to anybody else who is a part of your life in some way. It’s inevitable that some of them will very obviously not understand or care about what you’re going through – but let’s ditch that ‘going through’ phrase, anyway, because it’s negative and pain-inducing. Let’s use ‘discovering’ instead because PA absolutely is a voyage of discovery where you find out things about how it affects us that you didn’t know before. And that’s the important bit. You didn’t know those things before and ‘the others’ still don’t, no matter how clever with words you are. The only way to discover the truth about PA is personal experience. However carefully you try to explain the awfulness of it all, the likely probability is that one of two things happen:

  • They don’t ‘get it’ and quickly become bored and/or irritated and likely to focus on the fact that you don’t look ill and wonder if you’re exaggerating the whole thing for attention. They might even say so out loud.
  • They do ‘get it’ and immediately feel awkward and uncomfortable because they have no idea what to say to you, especially when you tell them that this is not going to get better. They feel responsible, as if they should be able to help in some way but have not the vaguest idea what to do.

There’s not a lot you can do about the first situation, other than decide not to go on about it when they’re around you. If a situation occurs where it is necessary to mention it – if you’re experiencing a ‘brain fog’ day or a crash, for example – just say something like: ‘Sorry, it’s this darned Pernicious Anaemia causing a problem today.’ Just that. Don’t be tempted to seek to prove what you’ve been saying all along, shout the odds about how they have no idea, collapse in distress, burst into tears or any other display unless you actually want the ‘Oh, for God’s sake!’ response that you might be likely to get from those in this group. Just the brief apology will leave both you and them feeling better.

The second situation, though, is different and more likely with those close to you and who care for you. Don’t go on and on but do explain that although you know there’s nothing they can do about any of it, it helps you a lot to be able to talk about how you feel (because it definitely does.) And do thank them for being there. It’s no easy task sharing life with somebody you love who has become incurably ill when there is nothing you can suggest and no ‘fix’ however much you want to help, or however much money you throw at it. Feelings of inadequacy or helplessness are common and if you love somebody you should want to protect them from that. Their good days are your good days, days when you feel reasonably well – or at least comfortably functional. Their bad days are your bad days; when you crash or discover a return of some symptom you thought had gone for good. Those in this second group are affected by the illness just as certainly as you are, and they deserve your understanding. Make sure they know you appreciate them being there.

Giving it Your Best Shot

And now we get to what is probably the most important part: focussing on life instead of on the illness. The illness isn’t going anywhere, and it doesn’t need you to keep on thinking about it for it to survive. All that’ll do is give it more power over you. One of the best things ever to improve your way of being, and that of those around you, is to have a project in place. The brain loves projects. It doesn’t have to be anything astoundingly amazing (though that would be good) as long as it interests you and focuses your attention for a while. Something you can allocate a bit of time to and that you can think about in odd moments when you’re not doing anything else. Take a writing course. Write a book. Or poetry, perhaps. Humorous, deep, flippant or totally ribald – it’s your choice and you can do what you like. Learn to play a musical instrument, or a different musical instrument if you already play one. Study something like art or photography, start an internet blog, or breed tropical fish. Literally anything that requires you pay some attention to it – and there are an amazing number of free or low-cost study courses available on the internet to help you!

Now, if you’ve just said, in your mind, something like: ‘Ah, but I can’t do that because of my brain fog…’ (or whatever) we can do something that is very nearly magical. That word ‘but’ is the mind’s eraser, consigning everything that went before it to the mental rubbish bin, so let’s use it differently. Using ‘take a writing course’ as an example, let’s put the ‘but’ in the right place: ‘My brain fog makes it difficult, but I’m going to study a writing course.’ You can probably even feel the difference that makes!

Of course, it’s your choice whether or not to embrace what you’ve been reading about here. But as a fellow PA experiencer who’s approaching his 80th birthday, I can promise you that finding a focus that is not PA (or any of its symptoms) is the way to still get the best life that’s available.

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


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