Something that happens when you have a chronic condition is that many people want to give you ideas on possible treatments: diets is a big favourite (paleo, vegan, raw, gluten-free etc), alternative/complimentary treatments is another (reiki, homeopathy etc) and then there are types of exercise (especially yoga) and general lifestyle things (from cocoa before bed to moving to another country). Sometimes it’s a tentative suggestion, sometimes full-on old-school Jehovah’s Witness zeal that’s hard to refuse. I know you mean well, but I’m still not going to try it, and here’s why:
I want to get better more than anything, but…
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There is no scientific proof that the thing works
This is usually the case, otherwise I’d have tried it already. Yes, there probably are people on the internet who think it’s a miracle, but it’s going to take more than that. People often think we should try everything that might possibly work, but that’s when these factors come into play:
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I don’t have time
This may seem strange but people without a chronic illness don’t realise how much time it takes up. There’s time spent in flare-up, when you can’t do anything much productive. There’s time buying equipment or pain relief and maintaining and replacing your special products. Time attending appointments and chasing them up. Time getting your prescription each month. Often pain or lack of energy just makes everything take longer. And we need days off too! There often just isn’t space for attending regular sessions of yoga/acupuncture/homeopathy/reiki, especially when there’s no convincing proof that it will help us.
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I don’t have the emotional energy to try it
Trying potential treatments can be really draining. You get your hopes up, sometimes you invest a fair bit of time and money, then it doesn’t work and you feel really disappointed. Imagine riding that emotional rollercoaster ten, twenty, thirty times. On top of which are the difficulties that chronic illness can bring to relationships, friendships and work. I don’t want anyone to think I don’t care about cures, to think I’m enjoying my situation, but please understand I can’t try every suggestion!
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It’s too impractical
This is often the case with diets where you’re already on a very restricted diet (or even tube feeding) and for suggestions such as moving abroad or going abroad for treatment, or a treatment suggestion that you know will be extremely painful or exhausting for you, again without proven effects.
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I can’t afford it
I already spend a fair bit on medicinal products and equipment. When I went through a more hippy phase, I spent a fortune on herbs and tinctures as well as alternative treatments. The wallet can only take so much.
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I’ve tried it already
And it didn’t work. Awkward, since you’ve just told me how wonderful it is. Now I feel like a failure.
So should I just keep my suggestions to myself?
Unless I’ve expressed an interest in trying new treatments, and unless you’re my doctor, yes please. From what I gather, most of us with a chronic condition have the internet and have googled our condition or symptoms many a time. If we want to try a new treatment or diet and we have the time, money and emotional energy, we will.
I know people are being nice and trying to be helpful, but sometimes it can really take over conversations, which are already often about our health.
If you found this post interesting, check out these:
It is possible to spend most of the day resting and yet have no free time
Are they exaggerating their disability and, if so, why?
Feeling like a disability fake even when you’re not: judgments and dilemmas
And other posts in the disability section of Blog posts in categories
Unconventional Wisdom 