Posted: Jun 24, 2020 5:29 pm
Fallible wrote:BWE wrote:I simply refuse the biologic route. And yeah, I try to be polite and say thank you for the information but 90% of the time people who offer unwanted advice go on and on about it and I occasionally go to the shut the fuck up place
Some good posts from you here. If you tell people about your illness, a certain percentage of them WILL start in with the ‘have you tried x,y,z ‘alternative’ medicine?’ The onus is then placed on you to politely tell them thanks but no thanks. I don’t want to have to do that. I told you about my illness because I have known you for a long time, and figured that in time you’d be noticing I’m not quite myself. I didn’t request advice on how to treat my illness. One person in particular asked me if I had heard that cancer can’t survive in an alkaline environment and that ‘turning your body alkaline’ would cure cancer. Of course I’ve bloody heard it, I’m someone who immediately started researching my condition in some considerable depth as soon as I found out what I had. This, and a basic level of intellectual ability, is how I know it’s complete nonsense. You can’t turn your body alkaline, and if you could, you would die. Sadly one ‘thanks but no thanks’ was not enough. She started in on me again later the same day, saying that she had suffered from polycystic ovary disease and an alkaline diet had cured it, so I should try this diet. Can anyone tell me why someone thinks that PCOD behaves the same way as stage IV renal cell carcinoma and will respond to the same ‘treatments’?
Another friend I’ve known a long time lost her husband to oesophageal cancer two months before I was diagnosed. We had all clubbed together to obtain some cannabis oil (illegal here unless you’re a child with epilepsy, having hundreds of seizures a day). I’m well aware of the reported benefits on cancer symptoms, not a problem. It was unlikely to harm him in his terminal illness. After he died and my cancer returned, she was left with an almost full vial, which she passed on to me. I gratefully accepted it, and would have gladly used it for alleviation of symptoms if she had not been storing it incorrectly for months. Unfortunately, it came along with a ring bound booklet full of complete nonsense, for example that cancer is a fungus, that it can be cured by cannabis oil and that doctors don’t want you to know. Clearly this doesn’t make sense on any level. As a basic start off, we live in the U.K. where we have the NHS. Doctors working in the public health system have nothing to gain by lying about effective treatments. As soon as I realised what this booklet was driving at, it went straight in the bin. Let’s hope she never asks for it back. It angers me to think she read all this at a vulnerable time in her life and was invested in her husband being cured by the oil.
There are several studies of the effects of various thc products on various cancers happening at least in my neck of the woods and I wouldn't write it off as a potential therapy, (it is well known to alleviate some of the side effects of chemo for example), but yeah. The witchcraft element is maddening beyond belief.
Also, a little personal anecdote. I was stuck in a cabin in the mountains for a week with several people who are very close friends and a new family who was friends with one of my friends. The man heard about my condition mostly because it's difficult to hide. He teaches some sort of alternative something and would not stop explaining my condition to me. I tried even listening politely and saying that I would definitely try his whatever when I got home. He got more rather than less insistent and offered to drive to an herb store and natural foods place to get me started right then.
That was like day 4 of 7. I wasn't mean by my standards but I did tell him that his advice was no longer welcome, that I was here to be hiking, not medicining and I would not be as polite if he brought it up again. He said, fine, just because I am an expert doesn't mean you need to listen. I told him that was exactly right. He never quite got over it and it caused tension within the group too for the next 3 days.
I understand that people really just want to help and that when they see something like a chronic condition their heuristic mode kicks in. It isn't really their fault but it would be really nice if it were common knowledge that unsolicited advice regarding medical issues is generally unwanted by the person who has to live with it.
Also, I developed lesions on my brain a few years ago from a therapy gone wrong and have had kind of substantial problems with words and recall ever since. It's significantly more frustrating when people try to help me with that than with the colitis. I mean, what the hell alternative medicine knows about brain wiring is exactly zero.
The therapy is among the more draining things in my life and to hear people tell me that neurologists don't know as much about brains as Chinese medicine people when I feel like I have just run a marathon and can't remember my kids names is triggering to put it mildly.
I guess this has devolved into a rant but I have found that being direct does work to some extent. I try to say that I do appreciate the concern but that advice is unwelcome.