Maybe a little bit deep for a Sunday evening I know but I just realised what I yearn for:
A proper conversation about how b12 impacts our lives.
Don't get me wrong, I've had lots of 'conversations' about b12 deficiency in the last few years - trouble is, and it took me far too long to click on, in most of them I now realise we were talking at cross purposes.
Now I'm more attuned to such conversations, whether they be with doctors, friends, or simply acquaintances.
You get the smile, and nod of the head in agreement.
...and that is the start of the slippery slope!
What you find follows is that people start to say things like:
"If you work harder you will take your mind off it"
"Oooh, I know. I have that too (This usually applies to having vertigo/balance problems and is pronounced both before and after they send you photos of themselves on the highest, whizziest ride at Alton Towers!
Then there is the "why don't you move on from this?" pronouncment. A clear indication they think you are just a whining little weasel and actually don't understand the illness and any damage you are left with.
Or how about, "Yes, but you only had a b12 deficiency, didn't you?" Another clear indication they really don't know what they are on with.
Obviously we have the big one that I personally, if I were in charge, would make a criminal offence - "But your b12 levels are normal now." Bring back hanging for that one and I for one would not oppose it.
But the biggest indicator relates to what they don't do. They don't ask questions. They don't ask which bit of you isn't working. They don't ask why the bit of you you say isn't working, isn't. They don't ask if your eyesight has improved or by how much. They don't ask you if you still have tremor or if anything in particular triggers it. They don't ask if the dementia their granny had could be b12 related. They aren't worried if they should get b12 deficiency because they don't understand that b12 deficiency is related to these conditions and think it's a blood condition and it can be rectified at the drop of a hat.
Oh and there is no urgency when it comes to getting treatment - even for themselves.
As b12 patients we are extraordinarily isolated. We are extraordinarily patronised. A very unpleasant experience to go with an unbelievably unpleasant and dangerous illness.
Ooh, and just to end. To show how far cross purposes can stretch - I spent a year talking to someone (not constantly, obviously) about the neurological damage b12 deficiency can cause - turns out she thought neurological meant psychiatric. She's just spent a year telling everyone how I've 'admitted' to having psychiatric problems. Yep, I've got psychiatric paralysis of the quadriceps.
Be careful out there, people!