Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

Seeing and believing

with 4 comments

Recently I had a visit from my parents. I have a bit of a blind spot with my parents in that I can never tell whether they are actually listening and taking on board what I say or whether they are just indulging me and going away thinking ‘what a crazy daughter we have’, which doesn’t help my relationship with them. What I do know is that they totally ignore everything I say to them.

I was once talking about my parents and bemoaning that they didn’t listen to me even though I had been making great bounds in fixing my fibromyalgia when they were still suffering from problems. In reply to this, a female friend I had thought understood cut me hurtfully with the patronising remark, “I know you believe you are right, but other people can make up their own minds you know.” It has echoed through my head ever since, along with a variety of painful “hypochondriac” and “get over it” remarks from people who are quick to judge but just don’t know what they’re talking about. It seems, sadly, that seeing isn’t believing for some people, even family and supposed friends.

One piece of news that upset me was that my mum let slip she has been taking statins. This is after she told me, “I’m not taking that rubbish,” a few months ago. At the time I got very angry and had a big rant about how dangerous and ineffective they were and made her promise she wouldn’t take them, and explained exactly how the side effects would be very bad for her condition in particular. Some dynamic young whippersnapper of a doctor has persuaded her otherwise. Her cholesterol is barely even elevated, and cholesterol lowering per se has never even shown any benefit for women. I consider it a particularly risky approach for my mum, as she has brain damage and muscular coordination problems from a haemorrhage a few years ago, and some recent nerve damage from an operation that went wrong. Her slightly high cholesterol would normally be helping her brain and nerves to repair themselves. Statin induced changes in liver function and muscle function are the last thing my mum needs.

When I tried to point out a few very hard and certain facts about cholesterol – such as that low cholesterol levels and statin use both increase the risk of cancer, depression and suicide, my dad flat out said, “well it’s very interesting but I just don’t believe you.” Which he has never said to me before, but I was glad he did because it felt like he was telling me the truth for the first time ever. It brought back to me the “I know you believe you are right,” comment above with painful clarity. I love my parents dearly, but it makes me wonder whether they think I just read absolute shit on the internet and regurgitate it like a monkey – and that what I know is intricate, complicated and often contradictory science, others regard as my own personal dungheap religion invented in my little cracked, warped head.

My mum also has high blood pressure, something she’s had for most of her life and she probably inherited from her mum, and she’s been put on medication for that, although the medication doesn’t appear to be working. She asked me what vitamins and minerals she should take to lower her blood pressure and I reeled off a list that began with magnesium. I then told her to avoid vasoactive chemicals in foods. They both perked up and looked interested when I said this, like it was the answer to their problems. Then I said that amines, glutamates and salicylates were the most important vasoactive compounds in foods, at which point they both looked really disappointed and their eyes glazed over as if they were thinking an internal “oh, that again.”

So I rather crossly sent them away with a copy of Anthony Colpo’s The Great Cholesterol Con in the hopes that they will at least see sense about statins. Of course I know they are not going to read it. Duh!

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Written by alienrobotgirl

24 August, 2007 at 2:19 pm

4 Responses

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  1. Don’t worry. There are greatful people that believe in your work, and I for one am certainly going to increase its awareness as part of my career.

    Elena

    26 August, 2007 at 10:17 am

  2. Thanks Elena 🙂

    Alien Robot Girl

    27 August, 2007 at 2:13 pm

  3. […] for Asperger’s syndrome. Surprisingly (or unsurprisingly?) this went down better than my comments about cholesterol. I think something actually clicked for my Dad. He started to look quite perky and interested and […]

  4. For me, this is one of the worst aspects of getting so interested in nutrition (due to my health problems). It is so difficult to explain things that now seem obvious to me to other people, and yet I find it so important to do so. Very frustrating. How do you explain that the food pyramid should almost be turned upside down… not to even mention delving into topics such as salicylates and amines. And why the heck is the failsafe diet, being as efficient as it is, so unknown? In my country, Slovenia, no-one seems to have even heard of it (even though I can clearly see tons of people badly affected around me). There is just a bunch of lunatics all over the place promoting things like frutarianism. And it also hurts me that my parents, that I would like to help so much, seem unreceptive to my ideas and probably think I’m a bit crazy too. It’s no wonder though, with such official recommendations, I can’t really blame them.

    The only one who really gets what I’m saying is one good friend of mine, but he’s very intelligent (used to win the maths and physics national contests here, but also understands biology very well). He got “converted” after he saw the effects on his own health. But these things are very hard even for a person like him to comprehend at first (and of course, diligently test after). It’s a bit sad, really. I also would like to change my career now to help people with all this info but on the other hand I’m a bit afraid what the stress of it will do to me. But hey, that’s life I guess…

    janchi

    1 March, 2009 at 1:06 pm


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