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.

Oh Aloe Vera 😱 Grim. When I was at university, my consultant was running a trial to see whether drinking a bottle of the stuff might make a difference. I was given a giant box of aloe Vera to get through. I managed the first one and was violently sick; never again. 20+ years on, that box is probably still in the cellar of a student house in Oxford, because I’m not sure I could bear to look at it long enough to get rid of it!

I actually like Colpermin peppermint oil capsules too, for emergencies when I can’t get hold of peppermint tea… taken with warm water, of course

Do you also find that because people don't see you at your absolute worst you know because you don't want to entertain even the thought of visitors that they don't see the full impact of your illness? Dh gets it as do my two sons.

I have a friend who I love dearly but she occasionally suggests jobs to me. I volunteer when I can and I think this gives her the impression that I could hold down a part time job. No one would employ me, I would have too many days off sick for pain and they would sack me.

Also why do people think that you don't continually research your condition yourself to see if there has been any sort of breakthrough medicine or even a bloody cure?

To everyone on this thread

@OnTheBenchOfDoom

Do you also find that because people don't see you at your absolute worst you know because you don't want to entertain even the thought of visitors that they don't see the full impact of your illness? Dh gets it as do my two sons.

I have a friend who I love dearly but she occasionally suggests jobs to me. I volunteer when I can and I think this gives her the impression that I could hold down a part time job. No one would employ me, I would have too many days off sick for pain and they would sack me.

Also why do people think that you don't continually research your condition yourself to see if there has been any sort of breakthrough medicine or even a bloody cure?

To everyone on this thread

You made me think about washrooms, restrooms, loos, or whatever you call it where you live.

With IBD you need the facilities, sometimes very urgently, and often.

Public washrooms freak me out. I can be noisy, smelly, and many other things no one wants to know about. Sometimes I sit in the stall just praying the two bimbettes who are doing complete makeovers and gossiping would just leave, PLEASE. I don't want to upset you.

I use disabled washrooms when flared but you would not believe the dirty looks I have had. Along the lines of you don't look sick.

We had a single self contained disabled washroom at work that I was comfortable using, but some people just liked the privacy and would basically camp in there. I asked that it be locked and those needing to use it have a key.

No, it had to be available. There was a large disabled stall in the ladies room right next to the private one.but it still had to be left unlocked.

I have read some funny jokes on IBD sites about public facilities. Ideas like have your kid or friend keep the hand dryer on so you aren't heard.

And people wonder why sometimes we just can't be bothered to go out and risk public washroom roulette.

@GetTaeFuck

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

I love this. Can you send me a weekly text too? 😂

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

🤣 This is one of my favourites- said to me about my UC by a member of my husband’s family when I had given birth to my second child 3 weeks earlier, and was recovering from a horrendous post-birth infection exacerbated by being on immunosuppressants. “It’s strange, because I would have thought your “stomach condition” might make you underweight but you’re just going to have to try and slim down after that baby aren’t you? No cake for you!”
Eyeroll And not that it matters in the slightest, but I’m about half the size of the person who said that 😂.
Same person: “Well, I hope you won’t be passing this on to the kids, the children in our family are generally very healthy”

Fortunately the extractor fan in the toilets at the school I volunteer in is very loud so it is like someone has a hairdryer on. It doesn't affect my needs (endometriosis so chronic ovulation and period pain, anaemia and daily chronic fatigue) but Dh has IBS and has to encamp in toilet cubicles at work. This is part of the reason he is so glad to be working from home and also why his list of wants in a house included more than one toilet.

@LoveFall would access to that specific toilet not come under some sort of reasonable adjustment? My sister has CF/ME and in a hot desking workplace has a specified desk closest to the kitchen and toilets so she doesn't have to walk too far when in the office. I think sometimes it needs to be spelled out exactly why that toilet is a need for you. How many other people in the building are disabled and need access to that toilet too? Are you in a union?

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

Love it.

I have ulcerative colitis, and the amount of people who choose not to understand that while IBD and IBS sound similar they are very different is very frustrating.

For me part of the problem is that I am quite a private person and so I really don’t want to share my symptoms (bloody diarrhoea! Mucus! Urgency to use loo sometimes resulting in accidents!) with most people. Which means that I end up nodding politely as they tell me about how their sister’s IBS was cured by cutting down on dairy, or drinking a particular herbal tea, or whatever. When in reality I know from my doctors that my UC is right at the end of my colon which means that diet really is irrelevant.

I also know beyond any doubt that when my UC flares up is completely random. And I’ve accepted that. Yet some people are convinced that the flares must be directly linked to diet, stress or whatever. I think after 10+ years I’d have worked that out by myself.

OP, your point about the amount of toxic positivism and ableism in the spiritual community is spot on.

i get the toxic positivity thing a lot. "but others have it way worse (so shut up, don't voice or complain). "you need to get right with God, fix your relationship with Him and it'll help." "don't focus on it." "do affirmations to help you on the mental side." "don't talk about it cuz that'll make it worse"(which probably really means that THEY just can't/don't wanna hear about it, which is THEIR issue in hindsight).
"just watch tv, read, etc to distract." "make a gratitude list" "pray more" "you're just being negative; don't be negative."

The toxic positivity gets me the most. The suggestions for foods, etc has never bothered me, dunno why, that's just me. And yes, I found out the hard way that a lot of modern era "spiritual" stuff and people are hell-bent on toxic positivity (which is also applied to EVERYTHING in life, not just health btw). I didn't understand it, and internalised it/invalidated myself, til I read an article about toxic positivity and in hindsight I'm like omg, that's a legit thing, and social ill. Not saying positivity is bad at all, def not...but positivity can be used in a bad, toxic way. I've even done it to myself; I think society has trained people to be positive no matter what even if reality says it's not, or even that not being positive is actually part of life etc. Sorry--end of rant.

Mostly people just wanna help and many spew back the first socially accepted thing or from media they can think of that maybe you haven't tried. I honestly have probably been guilty of it in life, not consciously trying to offend. Though I do have empathy...and understanding that I do NOT know what the person is going through. Usually I just listen if they need to vent cuz wtf do I know, I'm not them or God.

Also, related to toxic positivity: I think society has trained people to be super uncomfortable and ignore, berate, try and fix anything that is NOT positive, to the detriment of the person and society, even people doing this internally. "oh no, something not positive and happy and shiny....quick discredit it, ignore it, shoot it with positive arrows til it hides from our reality. People can't accept bad things, and especially not from other people. I don't understand why exactly. Everyone just ignore all things negative even within your own self, but if shit goes bad, well blame yourself anyway. Umm in real life earth life isn't all rainbows and butterflies ffs. Same way that death in many societies is swept under the rug, for example.

call out toxic positivity people! lol! I literally know people who refuse to talk about or hear anything negative...I mean as far as real world events going on, like a tragedy or climate problems and pollution etc, and being told no that's negative, I don't wanna talk about. I'm like ok, so everyone put your heads in the sand and ignore the world dying on us, for example. Yep, apparantly that's what's good to do. And if you aren't happy and positive about everything, all the time you are a toxic person. (also imagine if there was rampant toxic positivity back during like the civil war. People telling slaves shit like: well you could have it worse. At least you have x, y, z even though you are tortured, enslaved, dehumanised. Just be positive. Get right with God.) omfg.

toxic positivity is a way to silence and shame people I swear to God. Some not doing it purposely cuz it's been taught that way, at least since I was a kid. Do not acknowledge any pink elephants in any room especially if they are not happy otherwise you are bad. No wonder modern society makes little social progress and mental health is messed up. Problems are shrugged off as negative and everyone quick run to this shiny thing and just pray shit works out on it's own and accept everything passively but smile about it.

However it's only used to shame, belittle and silence people. I don't, but people who are toxic-positive like this I mentally want to invalidate everything they say from there out that is unpleasant that THEY say and be like, oh no no, it could be worse remember? just be positive. All your family died? too bad, just be positive, others have it worse, etc. I actually did do this once in a way they knew was mocking all their positive-no-matter-what-not-allowed-to-even-feel-negative bs, and the person was pissed so I don't do that often, but if I think it'll make a point I have.

Granted, some of the overly-positive stuff could be a defense mechanism in a global era where SO much stuff is going wrong. However, it still stands that it's ultimately unhelpful and the equivalent of hear no evil, see no evil, speak no evil and it is also not realistic on earth. Well I guess we all could ignore every negative thing; however eventually it's gonna snowball and run you down the hill sooner or later, as an individual or as a human species. Not that we all should take on all problems in the world, but not even acknowledging or thinking about them is a very odd phenomena to me. It might be a defense mechanism. Still irritating sometimes though lol. I do it internally to myself, more than to others/the world, though consciously try to catch myself. It also creates a culture of shame, cuz in real life shit ain't all sunshine, ribbons, glitter, and puppies! Also prob why so many of us kids in past and now are medicated away, as far as emotions. Nope no negative anything allowed. Even if our positivity is killling you, you will do it anyway and smile. smh!

Gotta admit your civil war reference took me a second, was thinking roundheads and cavaliers

and drs too are guilty of always citing stress and anxiety for all physical ailments, or depression and mental illness if you're a woman. It's all in your head, which means it's all your fault so just suffer and be mocked in the process.

So everyone, just be positive at all times and remember any physical pain you feel isn't real it's cuz you are stressed, sad, or crazy. Carry on, next.

Also, as a woman, I've had a number of times when I was legit sick and people saying "are you sure you're not on your period, it could just be your period and hormones." (so just ignore it and nobody wants to hear.)

literally I'd rather be sick and etc than go to drs; modern medicine is about as trustworthy to me as the Devil himself for many reasons but literally don't care if others go to drs etc. I never again will except for minor specific things.

Though the public as your dr is just as horrifying, as these posts atest.

Everyone try and listen to your own intuition about your body. (ok I am not able to do this, have been raised and trained not to, and am cut off from my body, though I see the tragedy in this now and try to). For those that can, tell anyone else to F*$#k off cuz that's your body

one last thing: the people that peddle medical/drs/pills etc for the answer for any and everything upset me more than the "try this food.." types. That's just me.

Just fyi, people on the medical journey praise that as the end-all-be-all too...like if you won't go to a dr then you suck, it's all your fault etc. So some are militant about medical stuff, just like with the people who are overly in your face about foods, oils etc. Anybody whose sole answer is pills and drs I refuse to engage with, for me. That's their religion (and it is a belief system), not mine. I'm not the whole a food will cure all or an oil, either, but it's the way some people are about it...like holier-than-thou....for any route a person could take health-wise...medical, natural, spiritual, some other way, whatever. Some people think a pill from the dr will fix all their woes but then also are the same ones who won't even let you talk about pill side effects cuz...gasp...not positive! and also idea of "never question a dr they are god and are to be worshiped and never questioned like god." (again do not trust your own body or self).

Peppermint is a major trigger for my IBS, and when it's bad I lose consiousness due to the spasms triggering another condition, along with other nasties like severe bloody constipation and diahorrea and passing bile. I've been given it many times in hospital instead of mebeverine which must be taken 20 minutes before food (as staff find that too much of a bother). My last admission was unnecessarily horrendous, literally because of peppermint tea! They wouldn't believe me, it's just ibs (then the usual about mindfulness, GCSEs, little job etc). I was in for four days. Lost almost two stone!

It's likely I've other bowel issues too (EDS can effect bowels too) but after being assaulted by a gastro when 17 I won't let them near me under any circumstances.

The whole x has y and they do sooo much more than you really annoys me. The fact is there's ALWAYS someone worse and better off that you no matter who you are. It helps no one and can really damage your mental health.

If I had one of my conditions, maybe two I'd be much better able to manage, it's the combination that's so tough and there's no support for multiple conditions, to quote social services, pick the worst condition you have and we can help with that. They simply don't get multiple conditions, especially if they impact each other simply cannot be divided like that.

I've heard a lot if I was as ill as I claim I wouldn't go out. If I don't go out then I don't have food or medication. That heatwave? I was without meds and eating from the bin. No one would help me.

I get it. I think it’s worse when you are newly diagnosed. The world and his wife has the answer. I have MS and various ideas have been presented to me in the past. I think people are trying to help and can’t face the fact that life for a person they love has changed. I have been diagnosed for nearly a decade now, so people have given up with the spurious cures now.

I know people who swear by peppermint so I know it helps some people, we are all individuals at the end of the day!

This all sounds very familiar

Well, I can easily do the Wim Hof thing as my neuro condition means I don't feel the cold. I guess his 'ability' is a quirky damage to his body, not a health thing at all!

The well-meaning suggestions have slowed down since my latest autoimmune condition which killed/damaged some of the nerves in my legs and arms. Leaving me in a wheelchair and frequently dropping things on myself/the floor. My neuro consultant told me that once you have one autoimmune condition, you get more, as they hunt in packs.

I am guessing even the most ardent believer knows their woo woo suggestion is just not going to cut it anymore with me. Herbs are not getting me out of my wheelchair!

When I was first diagnosed, my overwise lovely MIL mentioned she knew someone with the same extremely rare neuro condition as me and she was right as rain the next month! Still waiting for that cure to happen, 18 months on! I think she just wanted to give me hope.

So now I just get endless people asking me what is ‘wrong with me’, when they see the wheelchair. I just say, 'it was a neuro thing, it can happen to anyone'.

I think people like to think they are protected from illnesses and disabilities, if they place us in one category of ill people and tell themselves that will never happen to them because they are healthy people and they do .

The frightening truth is that we are all an accident or illness away from chronic illness/disability/death. I knew that, said that and still didn’t quite believe it when it happened to me.

I am fine in myself. It is just that my body is just a bit broken in places, but I manage the best I can, I must, what is the alternative? Just because I am out doing the family shop or taking the kids to the park doesn’t mean I am not tired, in pain and discomfort. Life goes on.

A few years back I was at a Forever living party (don’t ask why) When I refused to try their few samples of aloe vera, I was told it would work wonders for my bowel disease. I said that my gastro consultant said I was not to take any additional medicines without his approval. Then she said it wasn’t medicine, just an herbal remedy.

I pointed out if it had an affect on my body, I wasn’t allowed to take it and if it had no affect on my body why would I bother? She gave up and moved onto someone else and I let the friendship drop over time.

I do think positivity is a very good thing IF it is driven by the ill person and not used against the ill person by others. AKA I can say, others have it worse, but no one should say that to me IYSWIM.

Velvetbee for your child. May they have the best treatment/support possible.

Becca19962014 I really hope you have suitable support in place now. No one should be eating out of bins.

for everyone struggling today, may tomorrow be better for each one of you.

and drs too are guilty of always citing stress and anxiety for all physical ailments, or depression and mental illness if you're a woman. It's all in your head, which means it's all your fault so just suffer and be mocked in the process.

Yes, that's why so many women in particular take years and years to get diagnosed. And in my experience of reading lots of these discussions online, it seems to be the same conditions over and over again: PCOS, Fibromyalgia, CFS/ME, Ehlers-Danloss, Crohn's, Ulcerative Colitis.

@Roselilly36

I get it. I think it’s worse when you are newly diagnosed. The world and his wife has the answer. I have MS and various ideas have been presented to me in the past. I think people are trying to help and can’t face the fact that life for a person they love has changed. I have been diagnosed for nearly a decade now, so people have given up with the spurious cures now.

Ah yes, I remember when I first got diagnosed, people were practically falling over themselves to give me "advice" . There was someone who said "I know someone else who has that. Do you want me to introduce him to you? He's been in and out of hospital all the time". Yeah thanks for that. I said no. And funnily enough, I haven't been in and out of hospital all the time, just the once.

I had to tell a lot of people to fuck off at the time, I remember. Luckily (?) now it only happens very occasionally if I meet someone new.

And yes I did have an aloe vera incident! What is it with aloe vera? It wasn't even a Forever Living hun, it was just this annoying woman who was being all insistent about it. She actually gave my partner a bottle of aloe vera drink to give to me, which he brought home one day. I was so pissed off, I actually made him go round her house to give it back.

Fibro here. An illness that many people dont understand and just see laziness. You can't possibly be tired!!

On the treatment side, I have found taking magnesium orally and via a spray is a big help.

@WinglessSonglessBird

one last thing: the people that peddle medical/drs/pills etc for the answer for any and everything upset me more than the "try this food.." types. That's just me.

Just fyi, people on the medical journey praise that as the end-all-be-all too...like if you won't go to a dr then you suck, it's all your fault etc. So some are militant about medical stuff, just like with the people who are overly in your face about foods, oils etc. Anybody whose sole answer is pills and drs I refuse to engage with, for me. That's their religion (and it is a belief system), not mine. I'm not the whole a food will cure all or an oil, either, but it's the way some people are about it...like holier-than-thou....for any route a person could take health-wise...medical, natural, spiritual, some other way, whatever. Some people think a pill from the dr will fix all their woes but then also are the same ones who won't even let you talk about pill side effects cuz...gasp...not positive! and also idea of "never question a dr they are god and are to be worshiped and never questioned like god." (again do not trust your own body or self).

I understand your perspective, but honestly IBD is a life long debilitating condition. It can be life threatening. While alternative treatments can seem to help, the evidence is just not there for most of them

I have tried pretty much everything, including a herbalist etc etc. i am now just sick and tired of people making suggestions, usually things I have already tried.

And I am very thankful for my GI doctor who is a specialist in IBD. He just gets it. He has me on Entyvio and I have been in remission for two years.

Yes it is medical. Yes it is big Pharma. But I am so grateful.

I can now eat all those healthy foods like kale which had me in agony before,

I started a thread about this in the chronic pain section a couple of months ago, so totally relate.

@Becca19962014 I also have numerous conditions including EDS. Peppermint tea / capsules are a killer for me too. Like you said, no size fits all. I first took peppermint caps when I was being investigated for an ulcer. Apparently great for that. Absolutely evil on other issues. What a minefield eh? Ive just signed up to do a medical trial on EDS and gastro issues with Professor Aziz. They really need to understand the impacts more. Hugs and to you my lovely.

Oh you're too young.
You don't look ill.
Get out of bed you lazy bitch

All you need to do is exercise and eat healthily (sent them my meal plans, exercise regime and details of meds side effects of things like steroids). And asked them to produce something healthy that took into consideration allergies, no matter how much Iron rich foods I eat still anemic (amongst other things) and doesn't include Grapefruit as I couldn't stop meds cold turkey.

Then there was a neighbour who was a MLM bot. That was fun. They got pissed off with me when they tagged me in their latest fad crap that it would improve my life. My first question was if they had any medical/science qualifications. Second question was for links for qualified people endorsing these, and not whatever gurus were promoting the health benefits. It was my fault their business failed, and was deleted and blocked when I said nope it's cos you were trying to sell shit (the person still doesn't talk to me years later)

Had a GP tell me years ago that the asthma I had all my live was in my head. Also had them repeatedly refer me to a dietician who questions why I'm being sent there and now just messages back there are no more improvements Cani can make to her diet.

@OverTheRubicon

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.

Very true. So many of these comments and dismissive BS is other people trying to make themselves feel better and safer at our expense rather.

"You're only ill because you aren't trying hard enough" = "I'm a hard worker so this will never happen to me"

"You'd get better if you had a more positive mindset" = "I'm a positive thinker so I am safe from this horrible illness"

But it is judgemental and cruel.