Finding it difficult dealing with people who don't understand chronic illness

[Leavesofautumn]

It's so hard when people try to tell you to go vegan, or visit a naturopath, or go on a yoga retreat and all your problems will be solved.

I have a friend in her 50s who has never had a serious medical problem, and she just doesn't get it. The thing is, some people are quite insistent and authoritative about it, and it's slightly easier to tell those people to get lost. But in a way, it's the genuinely well-meaning ones who can be harder to deal with. They just don't understand why you wouldn't try all these natural remedies.

Chronic illness is complicated. You have to be very careful, sometimes try out numerous medications before you find the right one. Sometimes the right medication has side effects, so you have to weigh up what you do or don't want to put up with. It can be hard work to achieve a balance. One wrong move can see your health come crashing down.

And yet I just know there are people out there saying things like, that I should take more responsibility for my health, that they don't understand why I'm not interested in this random vitamin supplement they keep pushing, that it's my fault for not listening to the hippy raw vegan brigade. I swear there is more toxic positivity and ableism in the world of spirituality than any other scene I've encountered.

If you have a friend with a chronic health condition, please stop recommending random stuff unless they have specifically asked you to. It's very stressful for people who are managing as best as they can, and it's also a bit insulting, insinuating that we haven't already carefully researched our options.

I hear you! Or it's the 'oh I thought people with Crohns were thin!'

Yep, Crohn's here. "But you don't look ill"
Have you taken some paracetamol? No, because it makes my stomach and guts bleed so it isn't worth it. Constantly compared to people's IBS, which can be very bad indeed but is not likely to require an op!
My own mother tells me to keep a positive mental attitude and I won't go into a flare up. Doesn't quite work like that!

IBD here….according to someone I should try aloe it’s a cure apparently…apart from IBD’s have no cures!! And I’ve been on just about every type of drug available to help…but no this aloe stuff with actually cure me

@BobbinThreadbare123 I also get well you don’t look sick I wish I could show my bowels to them to show how sick I actually am

Also been told to do more exercises and eat better, it’s also often confused for IBS and I should try a probiotic

Urgh! People have known one person with MS before, usually a work colleague in a stable, well controlled phase and think they get it. Add a side serving of older relatives with some intangible, unspoken, subconscious believe that any disability is a moral failing and I really start hating people. (Husband rather than me.)

I sometimes wonder about these people who think disability or illness is a moral failing. What happens if that person then gets one themselves? Do they end up hating themselves as they think they've failed, or do they ever change their tune and realise they were wrong?

I think the one that wins me up more than offering dodgy homeopathic "cures" are the ones who say, "oh are you still struggling with that?" Or who act bored because you've not got over it yet.

Yeah, the clue's in the chronic bit..

I agree totally BUT some things do work for some people.

I have rheumatoid arthritis. I've been told about ALL the alternative therapies. I discounted them all. But came across some proper research about the importance of vitamin D3 in people with active inflammation. The Drs were fully aware that I struggled to keep my levels up and suggested an otc supplement. Didn't make any difference. I started looking into it all and decided to get a vitamin d3 spray as it absorbs through the oral membrane. Also got a set of b12 s as modules add my levels were low but not low enough to trigger injections. Within 4-6 weeks of me hammering the d3 and taking self administered b12 injections I was feeling better than I had in years. Then I remembered that my RA actually started ten years ago, a few weeks after I gave up on the low carb wheat free diet that I'd lost 2 stone on. In April I made the choice to get back on it and I feel wonderful. My keratosis pulse is had vanished, my chronic Heart burn and hiatus hernia have not bothered me in months and I've lost 34lb without really trying. My allergies have also died right down and while last year I struggled terribly with Hay fever, this year I've had ONE day when it was bad.

So I do think certain things that aren't "medical" can help but it very much depends on the person and their frame of mind. Do I still take my biologics injections? Damn right I do! Do I think juice plus will cure me? Not a chance do I think yoga could possibly help me to feel more strong? Yeah it might. But not if I'm miserable, I'm pain and swollen with an uncontrolled illness. Horses for courses C and all that. I'm quite happy on my new diet and feeling great but I would never force it onto somebody else.

There's things I've tried out of desperation and found helped.

The most helpful "alternative" medication was banned by the EU in quantities that helped and I was forced to stop it, I was devastated, it helped me so much. There was scientific evidence which I was a part of, but within months of publication the EU banned it and it's no longer possible to get it.

I found something else that helped me with another condition (again specialist recommended) and since brexit it's no longer allowed into the country as its from Australia. Can't even order it direct, gets turned around by customs.

Some things though can be dangerous to even try.

@Leavesofautumn

I sometimes wonder about these people who think disability or illness is a moral failing. What happens if that person then gets one themselves? Do they end up hating themselves as they think they've failed, or do they ever change their tune and realise they were wrong?

I thought like this due to my upbringing. Honestly it never goes away. Even with therapy. It's hell.

@MedusasBadHairDay

I think the one that wins me up more than offering dodgy homeopathic "cures" are the ones who say, "oh are you still struggling with that?" Or who act bored because you've not got over it yet.

Yeah, the clue's in the chronic bit..

You know what else, there are so many charities out there who are funding medical research, either into cures or better maintenance treatments. Sometimes when people ask if there's anything they can do to help, I tell them to make donations to specific charities or medical research projects. But no, they're not interested. They only want to "help" on their own terms, in a way that confirms their own worldview.

As for Vitamin D, it's well documented that lots of people in the UK are low in Vitamin D. Millions of people with medical conditions are advised by conventional doctors to take Vitamin D. It's not an alternative or woo treatment.

Oh yes, I have a child with cancer, I’ve had to distance myself from friends who bombarded me with ‘cures’. It was particularly galling because I was spending hours digging through research papers to tease out the truth.
Friend would say, ‘there’s an amazing new treatment..’ and it would turn out to be a study of 8 people whose lives were possibly extended by up to 6 weeks.’

"As for Vitamin D, it's well documented that lots of people in the UK are low in Vitamin D. Millions of people with medical conditions are advised by conventional doctors to take Vitamin D. It's not an alternative or woo treatment."

I agree it's not woo but it's also not widely publicised or even known . People think it's just a trivial vitamin dont they? OR those huge swathes of people in this country would NOT be deficient would they? You don't get to say on one hand " I'm sick of people recommending me vitamins that most people are deficient in " and then on the flip side "oh everybody knows about that so it's not even news".

I do think ( and I'm likely going to be flamed for this ) that chronic illness , especially of you haven't found a decent treatment yet, is so exhausting that your don't WANT to try other things. Even things that have a viable potential to help. And I totally get it. I've been there myself. Knowing a takeaway wasn't the best nutrition but my kids and I needed to eat and my feet were too swollen to stand up. Not wanting to hope that another treatment may work.... only for me to be left in a worse state than I started. It's horrible. But for me it's very much about trying my best on the god days and licking my wounds and regrouping on the bad. And if I didn't need two jobs replacing I might just try yoga.... my fitness levels have plundered in the last ten years and now my core is so weak I get terrible back spasms just from doing a trip to Aldi with the putting stuff in the trolley/on the belt/in the car. So yeah, yoga WOULD help and I'm a fool to suggest otherwise. It's all very contrary 🤷🏼‍♀️😂

@Velvetbee

Oh yes, I have a child with cancer, I’ve had to distance myself from friends who bombarded me with ‘cures’. It was particularly galling because I was spending hours digging through research papers to tease out the truth. Friend would say, ‘there’s an amazing new treatment..’ and it would turn out to be a study of 8 people whose lives were possibly extended by up to 6 weeks.’

That must be absolutely devastating. I would like you to know that when I am talking about illness in this context it's about auto immune illness/ joint problems/allergies etc. Not something like cancer. It's horrific how people exploit vulnerabilities when one has a diagnosis and is desire to find a cure.

Regarding yoga, for me it's about the extent to which people claim it helps. Like yes, if you have the energy to do it then it can help reduce stress, and help with stretching if that's something you need. The problem is more about the people who insist that you MUST do yoga and then all your problems will be solved and all your symptoms will magically disappear.

I do do yoga myself for my own reasons, but it barely makes a scrap of difference towards my medical condition. But a lot of people who run in these circles tend to be in overlapping scenes, so alternative health, spiritual events, 5Rhythms dancing etc. And it's these people who only want to help on their own terms. When people say they're only trying to help, it is very rarely selfless. They do it to try to confirm their own worldview, to prove that they're right and Big Pharma is wrong. They're doing it to get something out of it themselves, and yet they won't acknowledge the part they play in the Social Model of Disability. They never want to stand up for your rights, or fight for better healthcare, or help you in the everyday ways that you really need.

I have chronic migraine. It’s somewhat managed, but does have an impact on my day to day life. Everyone seems to know an acupuncturist/Reiki practitioner/Chinese herbalist with a 100% success rate in curing migraine. I mentioned I’d tried the acupuncturist a friend was recommending and it didn’t work and was advised that “it doesn’t work if you don’t want it to”

I’m a huge advocate for the power of placebo and diet etc, but read the room my friend…

to all who are suffering or with loved ones who suffer/suffered

@TheSockMonster And I bet some of them talk about essential oils too, don't they. Even though essential oils actually cause migraines for a lot of people. Fuck essential oils.

I totally get you OP. I have MS and when I was first diagnosed, it seemed like everyone else knew better than my consultant what I should be doing! It drove me nuts!

[quote Leavesofautumn]@TheSockMonster And I bet some of them talk about essential oils too, don't they. Even though essential oils actually cause migraines for a lot of people. Fuck essential oils.[/quote]
Not yet actually, although I’m sure it’s only a matter of time.

I have had someone insistent that their Forever Living Aloe shite will cure them though. A friend who is a life coach and self-described counsellor thinks they might be due to repressed trauma and is pretty sure she could cure them with just a few sessions…

Actually I’m pretty sure my eyebrows involuntarily raise every time someone mentions essential oils as anything other than a nice way to scent the house, which might explain why I haven’t had that particular elevator pitch yet.

My DB has CFS/ME and has had some corkers, mostly along the ‘push through it’ and ‘mind over matter’ schools of thought.

I have a chronic autoimmune condition which has impacted my life hugely. I don't discuss it with anyone except dh anymore.
One relative calls and says "oh you sound better". The condition does not affect my voice at all, they just don't want to know.
As Medusa said they seem bored with the fact you are still unwell. Some people really don't understand the word chronic.
No problem but best to say nothing at all.

It's not just the moral failing crew. A lot of people would rather believe that people who get sick just didn't eat right or think positively enough or pray to the right Saint - because that way, they can feel safe from sickness.

Much scarier to admit that while many chronic illnesses do have a lifestyle component or can be somewhat improved with lifestyle changes, the reality is that it's luck and genes as much as anything, and no matter how many vegan protein shakes we drink, we all end up dead of something in the end. We're like the ghosts of Christmas future for some people.

I can remember my late DM telling me that my rheumatoid arthritis was caused by drinking too much diet coke.

@Gilead I could have written exactly this!! And no, I don’t want any bloody turmeric to remove inflammation, nor do I think that MLM-potion “bowel cleanse” or whatever will cure me! No I don’t think I need more fibre! Nor do I want to take immune boosters to offset the immunosuppressants I’m taking every day to keep me in one piece!
I’ll grudgingly allow peppermint tea, though- for me that works wonders to ease discomfort (not agonising pain, obvs).

My dd has severe eczema, her dermatologist was considering putting her on methotrexate when she had a severe flare up. She has had multiple medication, emollients and light therapy treatment.
People seem obsessed with advising us to try creams, usually just normal creams you buy off the shelf with no active ingredients such as child's farm baby cream.
MIL will send us clippings from the daily mail with articles about wonder creams like aqueous cream 🤔
It's very frustrating, I know people have good intentions, but it's hard to give a polite reply sometimes

@BusMum79. I discovered peppermint tea in hospital, routinely given by nurses after bowel ops to ease the pain of wind after surgery. Works really well.
Other than that anyone can go jump in the proverbial lake, or as I prefer to say: fuck right off with your aloe Vera and nonsense potions, if they worked the consultants would be using them!