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.

Colleague today gave the opinion that if she had long covid she'd "just get on with it because you have to don't you..." 🤔🙄

slightly different but when friends?/relatives of someone who is developing dementia, say to the one caring for them, you need to just leave him/her alone. don't keep telling them what to do. they can look after themselves.
if it wasn't so tragic, it would be funny, almost.
akin to letting a toddler wander about a traffic junction, get on random buses etc.
people who don't pay enough attention to really understand a condition, and all its limitations, risks etc, yet presume to diagnose and pontificate.
also a neighbour near here, complex medical conditions. AC complain about cost of careworker; mum should just wash herself in the bed etc, despite some days not being able to lift a spoon and needs feeding. they hate to see her hard earned money being being wasted on care. won't be much left for them.

@Pericombobulations

With in days of being told I had MS, I got a work colleague telling me all I needed to take was tumeric. She knew someone else who was cured just by taking tumeric. That was probably the worst I have had to deal with.

My mum keeps telling me I seem fine with no symptoms and every single time I explain, no I am in constant pain, just minimise it (partly as my mum was overly invested in any pain I felt growing up).

Oh yes, turmeric. It's anti inflammatory you know.

I could probably start my own pharmacy with all of the (expensive) herbal this and thats that I have tried.

Because yes we will try pretty much anything. A drink of neat aloe vera anyone?

Because yes we will try pretty much anything. A drink of neat aloe vera anyone?

Oh god, don't go encouraging the Forever Living huns. MLM sellers must be the pushiest.

Oops. It will never cross my lips again.

My worst is being told I just need mindfulness in my life and, to really try. Mindfulness. NHS cure for everything.

Along with, sarky comments about getting a GCSE and little job. Because apparently my undergraduate, postgraduate and professional degrees aren't real, because someone like me could never achieve those.

Fennel tea or turmeric capsules anyone?

I can smile and nod when it's my stuff, but I'm finding it increasingly painful to keep having to remind my own family that DS s condition isn't just going to vanish one day. I feel like I'm being mean to them.

Yes. I have chronic pain. I recall a well meaning individual coming out with the amazing suggestion:

" Curtains! Have you thought of IBUPROFEN?".

Oh I also tried the aloe Vera drink. Horrible stuff!

Oh and I forgot the GP who told me I needed to learn to do what firewalkers do and ignore the pain...

My worst experiences have been with depression (i have a number of chronic conditions) - everyone seems to think that i should take up running / sit in a forest / have a nice bath. I’m sure the narrative around self help actually made everything worse - i felt such a failure that I couldn’t deal with it and even the GP seemed to minimise it. It was only when i ended up under the crisis team that anyone took it seriously.

I suppose i'm lucky I don't really have anybody that bothers to offer solutions.

The worst bits are the medical professionals. A psychologist told me "everyone is a bit autistic". The pain clinic physician told me "you just need to be more resilient" when a family member died just before my appointment (being with them in hospital during their final weeks when I also had severe depression was making it a bit difficult to exercise). A GP asked me if I had stairs to exercise on, when I was bedbound/needed a wheelchair. They don't seem to know their arse from their elbow sometimes, it certainly doesn't fill you with hope.

A well meaning friend suggested that I go and see an alternative health practitioner who does something with magnetic stones to treat my lung cancer. I said that I just didn't have the mindset for alternative treatments and she to.d me it was my loss because her neck problem (undefined) had been cured completely. But then the same friend was horrified that I've had my Covid vaccine and that I use a cellphone and have wifi.

I just got a new wheelchair. It’s not quite set up right for me - we wanted to try having my feet in a slightly different position and it needs changing to more how I had it on my old wheelchair as it turns out not to suit me.
Friend asked if I’m free to meet up, I said no as the tech is coming to do that. She’s never used a wheelchair in her life. And yet explained in detail who she didn’t like how I was sat in my old wheelchair, it really worried her as it didn’t look right and asked if I should change this one or keep trying it?!

I also have chronic health conditions and I’ve noticed over the years the shift from suggesting random things that they’ve heard of to not very subtly letting me know that I’m ill because I must WANT to be ill. If I just changed my mindset then the incurable Lupus/Hashimotos/Rhumatoid would just melt away and I’d be free. That being ill has become part of my identity and it would be too frightening for me to contemplate wellness.
Fuck em I say. Family birthday lunch tomorrow and I just cannot be arsed to make the effort, just the thought of chewing makes me want to lie down.
My neighbour, nice woman, said she had started taking a vit C every day and it really perked her up, I should try it!

I've come to cure you all!!

MIL (with whom I am NC) has emailed DS19 to extol the virtues of Wim Hof's miraculous breathing exercises. She suggests he tries them to help his anxiety and shyness. She says, and I quote, "this cured me of a heart attack a few months ago".

she also believes in different diets for different blood groups, the wonders of kefir to cure most things, the not eating after 6pm diet, and the buying lots of food but letting it rot in the fridge then throwing it away so you basically haven't eaten anything diet

Just Google Wim Hof.

Oh. My. Days.

Breathing, cold exposure and mental resilience to carry on the new regime.

Really??

Laughing out loud here at Mr Wim Hof. Love the photo on his website of the bare chested guy in the fur hat. Me Tarzan You Jane.

The sad thing is some people believe that nonsense.

Oh, and the testimonial that says it cured the "holes" in someone's brain!

The GPs I work with have patients regularly ask them if Mr Hof's regimes would work for them. Most of the GPs reply with something like "breathing is an excellent way to avoid dying"....and move swiftly on

for you all. No doubt these flowers contain a cure

We had all manner of daft suggestions, none of which would’ve cured my DH from his terminal cancer (again, the clue is in the name).

I’m so sorry you have to put up with the ignorance on top of your health conditions.

I was once told to see a medium to find out who the voices were I heard, after referencing my friend who recently had ended her life who they felt very clearly believed was my fault, and if I just went to a medium to ask her forgiveness I'd be free. I was devastated. Never went. That gem was from the manager of the community mental health team - a senior mental health nurse. I didn't do it and was written up as failing to engage. He even had ones "business card". Only £50. Oh and the person he recommended was the departments OT!!

I'd forgotten all about that, until I saw an ad for one on the site I just visited.

I have several long term conditions and children both with disabilities and chronic conditions….honestly I find ANY discussion of health utterly boring. I would just not talk about it.

DH has diabetes. It’s not lifestyle related but hereditary. He’s had loads of people tell him he can eat/exercise it away.

I've been told to 'walk through the pain' (I do that all day, every day); that I'm too young to have my condition (like it's my fault or I chose to have it); that if I'd bent my knees more when younger I now wouldn't have arthritis (yes, really); that I need to practise daily Tai Chi; that it's all in my mind; that I'm not adventurous; that if I walk more it will pass; etc etc
Just makes me want to scream!