I realised recently that when I wrote my previous articles about pernicious anaemia, I inadvertently missed out on something about the symptoms. They seem to be different for almost everybody!
With their logical mindsets, this might be why GPs frequently misdiagnose the illness – this variability just doesn’t fit their scientific thinking processes.
You get measles, you get spots. You get chicken pox, you get different spots. You get bronchitis, you get a cough, and you wheeze when you breathe. You get pernicious anaemia, you get… well, there’s the problem.
This illness can be the rubbish bin of symptoms common in other illnesses, so misdiagnosis is not surprising. It’s caused by an inability to absorb vitamin B12 through the gut, and not so long ago was an illness with a 100% fatality rate – that’s how important this particular vitamin is.
The ‘classical’ symptoms of tingling in the extremities, along with physical weakness and exhaustion, often aren’t part of what an individual might experience to begin with.
The fact that the one symptom that is almost always present – anxiety – also explains why it so often looks like a psychological disorder as far as a GP is concerned.
Even after a correct diagnosis, many sufferers continue to experience a variable ‘mix and match’ set of symptoms that can appear with no preamble and might include any of:
- change in blood pressure (high to low or the other way round)
- painful tongue
- sore and/or hot feet
- numbness in all sort of odd places
- intermittent polyuria (excessive peeing)
- diarrhoea (or both at the same time, which is disconcerting)
- absent sex drive
- poor balance (walking into door frames is common)
- brain fog
- poor appetite
- gastric reflux
- wind (gross, both ends)
- aching joints
- acid indigestion
Not only that, but it’s astonishingly variable in how it affects those who have it. At one end of the scale, a sufferer can have one injection of vitamin B12 every three months and run about like an athlete as if there’s nothing wrong with them.
Another thought can be so ill that they have to learn how to inject themselves daily, but even then, they can barely climb a staircase without hauling themselves up by the bannisters. It certainly is an unpredictably variable illness.
To partners, family, and friends
This illness is nothing to do with not getting enough sleep, eating too much ‘junk’ and not enough fruit and vegetables (vitamin B12 only comes from animal products), spending too much time on social media, partying at all hours or swallowing who knows what in some dodgy pill from an even dodgier supplier. Although it is true that a vegan or vegetarian diet and too much alcohol can be partly responsible.
But it certainly doesn’t help when you say: ‘It’s just a vitamin deficiency, for goodness sake – how bad can it be? Just swallow a supplement or something.’ All that does is encourage those with the illness to hope you get it yourself one day!
It’s downright hurtful when you read it up on the internet, discover a completely different set of symptoms and say suspiciously: ‘Well, this doesn’t say anything about what you’re always moaning about,’ before wondering aloud if it isn’t a supreme case of attention-seeking or a ruse to get out of doing something or other. And going into irritation mode: ‘This damned illness of yours is driving me potty, and I certainly didn’t sign up for this’ is even worse.’
Yes, it can be irritating and frustrating for others. But it’s more so for we who live with it, and we certainly didn’t have any choice. And what makes it even more uncomfortable is the guilt many feel over unintentionally foisting it onto those around us, coupled with sadness about losing the life we used to have. And by the way, the fact that we often don’t look very ill is no indicator of how we actually feel.
Those around you, however close they might be, can have no idea what it feels like and because they don’t know how to help, they get frustrated and sometimes irritated.
They can even get angry when they believe you might be exaggerating the whole thing. But they don’t choose those feelings or those ideas any more than you choose your emotional reaction when they vent their mood a bit.
But this illness isn’t going to kill you, and neither is it going to go away and when you finally manage to totally embrace that idea you can begin to adjust to life with the illness and even hope you have it for a very long time.
Forget what you used to be able to do and instead start to think about what you can do now – the human animal has evolved to fare far better in life with a purpose than in one that just meanders through misery all the time.
Find something that demands whatever concentration you can muster – exercise your ‘attention muscle’, and it will grow stronger.
- Take a writing course and write a book.
- Learn to play a musical instrument.
- Build a model village.
- Breed tropical fish.
- Take up the tapestry.
- Learn a foreign language.
Do anything except hanker after that, which you can no longer cope with because that part of your life is over and all you can do now is move forward.
Terence Watts is the creator of Brain Working Recursive Therapy (BWRT).