What do you wish people understood about chronic illness?

[WhiteRosesAndCandles]

I live with health conditions that have negatively impacted my daily life for more than 20 years and am not going to get better.

Medication protocols are restrictive. I have constant, moderate pain and this causes significant problems with quantity and quality of my sleep.

Some days are better than others. I know there will be bad days. I don't look ill, I am never 100%.

It is exhausting to constantly explain what I am not able to do and why I need to manage my life around medication and appointments.

It is not for me to say what the quality of life is for other people.

Just because I am younger does not mean I am in better health.

Yes X is still a problem. It was yesterday and will always be. I don't complain, it will never get better.

Sometimes I just can't, it isn't personal.

I wish dh would understand more that if I do something in the morning and then spend the rest of the day slumped on the sofa or in bed I’m not being lazy.

When you are having a good hour/day/few days it doesn’t mean you are suddenly better

Just because you can do a task one day it doesn’t mean you can do it every day.

Pain meds do not get rid of chronic pain, even opiates don’t and the longer you take them the less effective they become. There is often no magic cure.

Just because I don’t look like I’m in pain doesn’t mean I’m not, I’m just use to it.

I find the worst people are the people who know me but don’t live with me.

That no amount of 'positive thinking', 'think the pain away' or 'it's all in your mind' is going to do anything for the fact that my body is somewhat successfully attacking itself.

That being a wheelchair user is far from the tragedy people seem to think it is- if anything it's been the best thing I have ever done and given me my freedom and independence back. And actually yes, I very much DO need my wheelchair thank you very much.

No, I can't 'try harder' to walk or walk like a normal person. Walking for me feels like I'm wearing my thickest pair of slippers, while trying to walk on soft sand with legs that have pins and needles.

I've heard all of these quite recently grrrrrrr.

People will never understand the impact of a chronic, debilitating or life limiting illness until they experience it for themselves. They just won’t and, in many ways to preserve their own mental wellbeing, they can’t wrap their heads around how someone can be struck down with an illness suddenly and out of the blue, that can impact life so much. Because if it can suddenly happen to you, then it can happen suddenly to them - and that is scary.

Sending hugs to everyone on this thread. Yes our lives are harder than others and we deserve a bloody medal for not physically assaulting every muppet that suggests a miracle cure (daily kale and açai smoothie 🤢)

The pain is, well for me at the moment, manageable. I know there will come a tipping point when the bad days outweigh the good. As long as I can physically make it onto a plane, I have my escape plan and the funds to see it through. I want to die on my terms, it would be lovely to have my family with me but I won’t risk their prosecution.

Anyway, here’s hoping that’s a few years away. Until then, I will ignore the nonsense and keep putting one foot in front of the other. What other choice do we have?

Oh the “positive thinking”.

I had a GP tell me to do this when I had a major flare up. “All you need to do is imagine you don’t have the pain and it will then go”.

They got all hurt and offended when I asked them if they were taking the piss and the simplest thing to do would be to prescribe me what I had before, as it helped.

All of the above. Plus, the competitive "who's has it worst" from others especially those with chronic illness themselves. No one is getting brownie points for being sicker, more complicated or on different medication.

That people will never truly know what your day to day is as a chronically ill person I'm sure like the rest of you I'm a very good actress but they don't see the before or after. Nothing pisses me of more then people mainly on here who says comments like my neighbours, cousins, sons, girlfriend is on pip and there's nothing wrong with her. My own family don't even know 99% of what I actually go through.

That things that don't make sense to them might make perfect scientific sense if they knew how my condition works.

That chornic conditions can involve all the same trauma and horror as a cancer diagnosis (risk of dying , treatments with awful side effects) but none of the sympathy or concern from others.

That there's a trauma in having battled for years without a diagnosis.

Yes, agreed, finally accepting a wheelchair would help was the best decision I ever made. It was pricey (I needed an electric one as my arms are weaker than my legs) but it is my freedom. On days I would be housebound I can still get out into nature or take my daughter to the shops

That I think murderous thoughts when they suggest yoga/mindfulness/eating lentil and quinoa salad or whatever will magically cure me

I love yoga! I was doing it all the time before I got ill and even pushing through doing it before I was diagnosed. If that was the solution I would never have been ill in the first place! (Same with healthy eating).

It's so insulting and ignorant.

That constant pain is exhausting.
That you will only ever see me on my very good days. So, yes, I may look great every time you see me. That doesn't mean I am exaggerating so I don't have to work.
People will smile and say fine when you ask them how they are, even though they are completely broken.

That if a person with a chronic illness says they can’t work, then they can’t. I’ve become so isolated in order to avoid judgement and it’s really hard for me. I tried at some points to explain but then I gave up.

I would change the narrative that we see in the right wing media and from the current Labour government....

Basically the toxic beliefs that people with disabilities/long term health conditions are a 'burden' on society or 'scroungers' who exaggerate their symptoms and that they can be 'cured' by getting more fresh air and making a trip to the job centre.

I find the above absolutely shocking.

This is so true. The chronic disease I have will eventually kill me unless I can get the right benign tumour or tumours removed. It’s just slower than any cancer at doing it.

Yes, I'm sure you're bored of hearing about it and it's various challenges but believe me, I'm more fed up experiencing it. What I'd give to say I'm in good health, no issues on form.
The absolute embarrassment of telling people that I have them (only do this if I absolutely have to)

The guilt I feel that my DC might have the same conditions is difficult. As a kind consultant said to me, I got issues from somewhere, albeit it didn't impact my parents as much.

Which leads me on to, just because we have some of the same medications,, doesn't mean our quality of life or pain is the same . It's not a race to the bottom.

That sounds really tough. I hope they are able to keep removing them.

For me, any cold or illness can be fatal, because it can cause my diaphragm to stop working. Also there are a number of common medicines (including anesthesia) that are very dangerous/potentially fatal. I have a medic alert bracelet but I worry about doctors not realising and giving me something I can't have (when I am very ill I can't talk /can't talk clearly). I have to take every cold very seriously.

That I'm not faking being sick, when you see me I'm faking being well

That PIP is not easy to get, but instead it is a stressful and humiliating experience for most

That chronic illness can happen to anyone, at any time, and without any warning

that people expect me to be able to take a pill and be better, despite years of evidence to the contrary. Senior manager last month in a serious manner 'have you taken your medication?' Truthful answer 'no as there is nothing that helps that i can take, I am 58 and have tried everything going, i don't need your cod advice'. it's so wearing. i have explained my condition several times but there is no attempt even at understanding.

I have rheumatoid arthritis, diagnosed in 2004 aged 31. People still think "Arthritis" only affects older people Inc medical professionals. People telling me if I eat this,do that it'll ease my symptoms 🙄🤷‍♀️

That I am NOT lazy

I feel seen on this thread. Thanks so much for posting OP.
I feel like I'm slowly disappearing from my own life. It's so draining to keep the smile on my face.
Giving the new meds a few months won't make a difference although I know people mean well when they say it. I thought this at the start too but have resigned myself to the fact that most drugs just make things marginally easier, at least for a while anyway...

That it’s hard on your spouse, and restricts family life no end.

And knowing this often makes you feel guilty and like you’re a burden, which in turn adds to your general feeling of shittiness about it all.

Just remembered another piece of advice: Positive thinking can fix everything. Gosh, I wish somebody had told me that 8 years ago!