Experience is vital to understanding

Many of you will have read about Clare’s predicament either here in my blog or on the FoodsMatter site. Clare suffers from almost total food intolerance – she is now reduced to about four foods, including venison and swede – that she can just about tolerate, has lost over four stone in weight and  is seriously starting to believe that she may starve to death.

Yesterday her story was in the MailonLine – which has the mixed advantage that readers can comment on the story. The comments have now grown to well over 150 and are totally polarised between those who are very sympathetic and are offering well meaning advice or at least sympathy and those who appear to be going out of their way to be offensive.
‘I just love venison and am partial to a bit of Swede. Especially if she is blonde! What a load of tosh!’ – ‘Ah the infamous Bambi diet’ or ‘Who cares? she wants to think herself lucky she can afford venison. Grow up woman – eat what you want to but don’t expect me to loose sleep over your silliness or attention seeking behaviour. Get a life!’ are amongst the most innocuous. What a change  in attitude there would be in any one of those commenters if they were struck down with Crohn’s Disease or coeliac disease, or, perish the thought, a serious food intolerance, and were all of a sudden struggling to find anything they could eat.

Which just made me think yet again – and very un-originally – that there really is no genuine understanding to be had unless you have been there yourself. John Scott had already commented that he had spent a good deal of time supporting Clare (who, under his guidance, is now dosing herself with helminths in an attempt to down-regulate her over active immune system) because he was one of the very few ‘who really understood how she was feeling’.

But I also remembered how I had embarrassed myself only last week by forgetting that the parent of a seriously allergic child can never relax their vigilance.  Alexa of YesNo Bananas, whose two-year-old son Sid is anaphylactic to nuts, egg, wheat, sesame, chickpeas and green peas, came to have coffee. Because I knew that she was not allergic, only Sid, and because I was not really concentrating, I offered her a nut topped muffin. But the parent of a nut allergic child can never afford to have any dealings with nuts, because some of that nut could stick to their fingers or clothes, and thence get onto their child’s fingers and into their mouth.

I ‘know’ that because talking about and writing about allergy is what I do. But I because I have never had a seriously allergic child of my own, I have not ‘experienced’ what it is like to live with the threat of your child having a life threatening reaction at any moment, so caution and lateral thinking about allergies are not programmed into my DNA –  if I am distracted, not focusing, not thinking, I can forget. A parent who has experienced it will never forget.