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.

Ive no help - it was three weeks ago I could get nothing. I thought I was going to die. Thank god it cooled when it did. I can't open my windows either.

The only help I was offered was a "worker" from a local charity which is part of police rehabilitation and know someone whose abusive to me works there - you are helped by everyone so they'd get to know where I lived and just how ill I am, that's just unacceptable to me, I know of others who work there who are on a similar scheme having been arrested but not put in prison (sort of community service maybe?) the DBS checks are overriden by police/social services if they believe offences won't happen again but they do.

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)

Wow. WOW. Ex-MLM people tend to blame themselves in the end. But apparently some people are so taken in by the bullshit that they still believe in it even after their "business" has failed. Cults really do have far-reaching consequences, even years after people leave.

@Becca19962014, one of the major differences between IBS and IBD is that you don’t bleed with IBS, Get stroppy with someone. Alternatively contact someone at EDS UK to advocate for you or to find an advocate. 💐

@Gilead I honestly don't have the strength anymore. I tried for over a year but I am practically housebound these days, there's no point, can't even get to gp surgery anymore. Never mind hours travelling for hospital (services locally having gone).

I was told blood is part of IBS.

It definitely is not. Trust me. It is, as I said a major difference.
I too have EDS and Chrons/Colitis. My Gastro and rheumy consultants actually talk to one another!

@Gingernaut

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 have asthma that was often triggered by perfumes and scents, but I also had the anticipation that a scent or spray may set off my asthma and that can makes me feel a bit anxious and get a bit wheezy. So what I'm trying to say is whilst asthma can't be cured, yoga or some kind of learned relaxation could actually help. I now just take the steroids and it just doesn't happen at all 

@Leavesofautumn the thing is you just don't know what might help, diet and how you are mentally is a big part of any condition, a bit of a circle really.

I don't have rhumatologist anymore, they discharged me as they didn't believe in EDS, even with a letter from prof Grahame, gastro I refused to go back to after my experience. Even if I was willing I can't manage at least six hours in a taxi to appointments anymore. Too ill to even get in one now!

I didn't mean to sound like I was calling you a liar, reading back my reply it was rather blunt and reads like that so I apologise for that.

Basically all I had was my GP and they dumped me March 2020 to just get on with everything myself; I've a lot more problems since then but given I can't get to surgery and only have a small room (too small for social distancing) being seen is impossible.

I have UC and am flaring atm, its delightful, wonderful pain in my bum, constantly exhuasted and using 2 loo rolls a day, if one more person asks if I eat enough fibre I will shit on their sofa!

@thebabessavedme

I have UC and am flaring atm, its delightful, wonderful pain in my bum, constantly exhuasted and using 2 loo rolls a day, if one more person asks if I eat enough fibre I will shit on their sofa!

You probably already do this already but if you don't already apply loads of vaseline in and around the bum hole every toilet session. Can help the burning and breaking down of skin. However it is best applied from the very start of a flare.

Plus a toilet bidet really helps me when my bottom is running like a tap. Ours is just cold water but enough to gently wash and I pat gently with a small piece of toilet roll (and apply more vaseline)

Everybody knows if you've got IBD that Sudocrem is a balm from heaven. Fact.

My son has crohns disease. Many times over the years I have been told it must be due to his diet and if I changed that he wouldn't have it anymore?? Or asking me will he grow out of it --- no, that is why it is classed as a chronic illness!

My mum has severe arthritis, she is on multiple meds and infusions. My old boss told me to get her to drink apple cider vinegar as that is the cure all for arthritis and "she has known" people who did this and their arthritis disappeared. I wish it was that simple. I did say if that is the case then doctors would be prescribing it.

Blood is not generally part of IBS. At least not in the same way as IBD. IBS does not cause ulcerations in the intestine that bleed and generally make them work very badly.

IBS could cause irritation from constipation or diarrhea and too much wiping, but not the type of bleeding IBD causes. Sorry if TMI but when in a bad flare sometimes all that comes out is blood and the toilet water turns bright red.

I am not minimizing the struggle people have with IBS but it does not mean taking steroids, immune suppressors, and biologics just to live a normalish life. I have been told I have IBS on top of ulcerative colitis.

Hugs to those in a flare. It is so hard. I am so lucky (touch wood) to have responded very well to Entyvio. I get infusions once a month because at every two months I started to flare again.

It scares me to think that the level of ignorance in the general population may come back and haunt me as I age and if I need additional care.

@BobbinThreadbare123

Everybody knows if you've got IBD that Sudocrem is a balm from heaven. Fact.

Yep, that works great too

ME/CFS here. If I had a quid for everytime I heard "You're just lazy, that's all ME/CFS is, another name for laziness." I'd be in the multi millions by now. I'd love to exercise more, I honestly would. I hate not being able to do the things I could, not being able to cycle because my legs don't work anymore (though I'm saving up for a handcycle, so... a good 3/4 years to go), not being able to continue horseriding because the nearest RDA doesn't have a wheelchair accessible mounting block...
Strangely, when I offer to swap with those who'd "love to spend all day doing nothing" and lay out the wheelchair use, pain, and constant exhaustion, they quickly change the subject. I'm not really sure why.

@Jasmin82

ME/CFS here. If I had a quid for everytime I heard "You're just lazy, that's all ME/CFS is, another name for laziness." I'd be in the multi millions by now. I'd love to exercise more, I honestly would. I hate not being able to do the things I could, not being able to cycle because my legs don't work anymore (though I'm saving up for a handcycle, so... a good 3/4 years to go), not being able to continue horseriding because the nearest RDA doesn't have a wheelchair accessible mounting block... Strangely, when I offer to swap with those who'd "love to spend all day doing nothing" and lay out the wheelchair use, pain, and constant exhaustion, they quickly change the subject. I'm not really sure why.

I’m sorry people say this to you. I have never had anyone say it to my face but have had it implied. I have me/cfs too. Who would want to live like this?