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 have a child with chronic illness and multiple allergies, so I get what you mean.
But it doesn't bother me much, if someone recommends something because they believe it works. I do sometimes take on board what they say if it sounds like worth a try. Most of the time, just nod and thank them.

This totally resonates with me. My health condition , which I’ve had for over 20 years, varies considerably practically from day to day. Different symptoms rear their heads or randomly worsen. I’m well practised in knowing what my body needs and treat each issue accordingly, or check something new out with a doctor if needs be.
It doesn’t mean I’m completely closed off to new ideas - obviously I will try anything that I think sounds helpful (although, over the years I have tried many, many things that haven’t helped so won’t be revisiting those unless something has changed). However, what I do find difficult is the implication that any one idea that a random comes up with will completely cure my problems, and that I will suddenly be able to be ‘normal’, and if that doesn’t happen then it must be my fault for not trying. Grrr 😡

Yup. Same.

No idea about what to advise, really.

I've had essential oils recommended for my allergic asthma before now.

Really?

After I've just told you I'm allergic to certain scents and oils?

Really?

I hear you! It's usually meant kindly but carries overtones of "you're not trying hard enough". Fuck that. The amount of pain and exhaustion I feel on a daily basis, if I get out of bed and don't snarl at you, I'm trying plenty hard enough.

It's not just chronic illness, when people have no first hand experience they often can't relate. Look at the threads on here where a poster says she is struggling in life and people suggest she just gets a cleaner. Zero awareness.

Yes!!!!!!! I think its very difficult for people who arent going through it to understand. Also, telling someone with chronic illness that they’ll feel better if they go out for a walk is not helpful

I’m tired of the people who just forget! Why can’t you do x, y and z? Because my arm was shattered in that terrible accident. Oh yes, I’d forgotten...

Family are the worst. Why are you pushing your shopping trolley in that weird way? Because I’ve got 20% of the movement that I should have in that elbow. Oh, YES, of course.

I've been chronically ill and I reply to each suggestion with the line " I'll discuss that with my medical professionals" and just keep saying it over and over. Eventually people stop making suggestions

@Gingernaut Yes I agree, essential oils can fuck off!

I have inflammatory bowel disease. What this actually means is that my immune system has gone into overdrive and is attacking itself. No, I don’t need more fruit and veg to increase my immune resoonse, I don’t need vitamins or woo to strengthen my immune system, it’s so strong I recently had my bowel removed. No I do not have IBS, yes I understand it’s painful but it isn’t life threatening.

Yep. I have chronic spontaneous and cholinergic urticaria

I get
"Oh I get a heat rash"
"Have you tried an antihistamine?"

No, the urticaria specialist had never thought of that

Also my other condition, autoimmune neutropenia
Doctor "so what causes your neutropenia"
Me "it's autoimmune"
Doctor "and why do you have that? That's a children's disease anyway, you must have heard wrong"

haematology weren't impressed

Yes! I have a new chronic condition that changes from day to day and has profoundly impacted (ruined!) my life. I have experienced a whole bunch of suggestions but very little real understanding or empathy and quite a lot of annoyance that I can't do the things I used to. Loads of my relationships have just disappeared, including people who I thought of as good friends!

Did you all know we have a new Chronic Pain section on Mumsnet? Helpful to have somewhere to chat with people who are going through this too www.mumsnet.com/Talk/chronic_pain

@Grimbelina Yes, you certainly learn who your real friends are.

Not the same but was struggling with fatigue at work when recovering from long covid. Had to be really strict about enforcing rest breaks and sometimes had to cut meetings short or finish early. One colleague in particular just couldn’t wrap his head around why for example I was struggling to get through a 2 hour meeting with no break.

In a cruel twist of fate he has now developed an auto-immune condition and is having to implement all the things I did. Might suggest essential oils to him…

I often get told to "think more positively" about it. Great! I'll let my neurologist know you've discovered the cure for epilepsy, he'll be thrilled

It's like they think there's a cure.

Uh, no. Chronic means incurable or long term.

Yoga, meditation, mindfulness, acupuncture, reflexology. you name it.

As it stands, if I take my preventer inhalers and my antihistamines, there is little to no problem day to day.

However, people see me when I'm well and ask why I'm still taking the tablets.

Because I want to stay well.

DBro has a chronic illness, every week I text him a ridiculous question.

“Have you tried eating pine cones? Apparently the crunch is what helps.”

The more ridiculous the better

Totally agree. It's relentless for me, where at least I am 'lucky' enough to have a disease that is clearly recognisable and able to be verified with lab testing, can't imagine how bad it is for people with chronic mental health issues, or those less clearly defined symptoms or illnesses that make other people sceptical.

Most of the time I feel very calm about it and let it roll off and mentally mark the suggester down in my estimation, but some days I feel like if one more person asks me if I've heard about the anti-inflammatory diet, or suggests yoga or meditation, I might actually explode into flames. Which would, in itself, be sort of cathartic, I suppose.

Ah yes, sometimes ‘helpful’ people give me diet advice to cure my type one diabetes, because clearly I use insulin, inject, test etc just for fun.

So rude to make unsolicited suggestions.

A lot of people believe in ‘woo’ bollocks and pseudo science on health/wellbeing.

Omg tell me about it. I have rheumatoid and osteoarthritis,also fibromyalgia. I find myself getting extremely irritated with a friend of mine,not so much because she keeps suggesting 'remedies' for my conditions,but because she doesn't understand that by the very nature of them,I have bad days,and days when I feel totally wiped out and exhausted. I have explained to her numerous times the effect my illnesses have on me,yet still I get the same remarks from her when I'm having a bad day,i.e. Friend - 'You're looking a bit tired Winter,are you ok'. Me - 'I'm having a bad day,I feel exhausted'. Friend - 'Why? What have you been doing?'. Aargh! I give up.

Just piling in on the thread to say I totally get it.

One friend - who is very kind but has very little understanding of my condition - got just unbearable during the first lockdown. I was terrified (after the Letter of Doom), then I got COVID and was very sick.

She kept saying things like "but you can't just stay in all the time. You have to get back out there". I wanted to pour a jug of water over her head after a while.

Also, have many friends who have drifted now that I can't keep up with them.

Another one with IBD here. You have really touched a nerve.

People always want to help i guess. But most have no clue how the disease works, what a flare up means and why you just can't pick yourself up and just get on with it.

But I don't want to regale people with my description of being on the toilet 25 times a day, bleeding, cramping, pan, exhaustion, joint pain and so on.

Endless recommendations about my diet, right down to comments on what I am eating. One hectic day at work I bought a pot noodles out of the vending machine. You would think I had committed one of the seven deadly sins.

Recommending going vegetarian, going vegan, eating more fiber, eating less fiber, cutting out gluten, cutting out dairy ,taking probiotics, drinking green tea, eating or not eating x, y, or z.

Even DH who knows as much as anyone about my disease comes up with things like "Maybe its eggs? You have been eating a lot of eggs lately."

Yes, I have. Because it is one of the most nutritious things I can eat right now without triggering an agonizing toilet session.

I would eat sawdust and nothing but sawdust if it would help.

Saying oh yes, my auntie's tenth cousin twice removed had that but she did X and it cured her,

It can be relentless.

Having to explain, yet again, why my face is fat and round because I am on prednisone again. Why I am gaining weight when I am supposed to be sick.

Oh, and my favourite. Asking me or telling me it is stress related. Aargh.

My all time best comment came from an HR advisor when I retired. "Isn't it great that you can look after yourself better now?"

As you can see I totally get it OP. Been there, done that.

Yes, everyone, what we mostly need is understanding and yes, sometimes a bit of sympathy. If the researchers and doctors can't cure it, telling a sick person to eat more of whatever or to cut out something is not helpful.

And personally I find it insulting when someone speculates it must be stress or how I cope with it.

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).