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.

That if I'm "fine" on a Monday, for example, and manage to meet up, have a chat, a coffee etc and get the stuff done I need to do, I can't then make any plans for the rest of the week. It takes so much out of me and I end up really drained and in so much pain.

Also that I genuinely miss working and wish I could go back. I'm not enjoying being on UC and PIP. Was talking to a "friend" about this just the other day and mentioned that we're planning on using the mobility to get a car instead of relying on taxis all the time. She seemed quite annoyed and just went "Oh. A fancy free car. Must be nice."

Oh god, the miracle stories are the worst

This is it completely. Most people have no clue how much suffering and illness for months on end is caused by passing on "simple" viruses such as colds cause some of us. I think people have short memories after the world going through a pandemic and so many have poor hand hygiene and no concept of keeping personal space.

It’s so horrible to know that you have a health condition that affects you everyday and it is something that can never be cured. This is my life, forever.

Yes it's a form of bereavement, of loss of what you might have had, but now never will. I can really relate to that, I sometimes wonder who I might have been without the health issues and disabilities. However it is what it is, I've come to terms with it after many years. I know I'm not alone with it, there are thousands of people also trying to get along as best they can with what their health throws at them every day.

Please stop asking me what I eat.

Just because it’s mainly an invisible illness does NOT mean it’s in my head. The amount of gaslighting I’ve had from family about my physical illness is horrendous and it has taken a toll on my MH.

That my life is restricted in ways they cannot imagine.

That my consultants know best, not some random person who told you their neighbours-best friends-brothers-SIL-2 times removed cousin had the same thing and they are either dead now from my illness or cured because they skipped around a dandelion 3 times in the moonlight or other such nonsense!!

That I am not magically going to get better.
That I can't predict whether I am going to be well enough to do an activity on a particular day and it is frustrating for me too.
My medication does not fix me nor does it make my pain disappear.

The "on a scale from 1-10 where would you score the pain" is bullshit. Do you want me to score each bit, and this 5 is actually bothering me or causing more concern than the 7 in the other part of my body

That some days are better than others but there is always an underlying layer of pain

That battling with the DWP for a pittance is utterly exhausting and nobody in their right mind would put themselves through the ordeal of applying for PIP etc if they didn't desperately need the money and support

That dealing with uninformed doctors, especially in primary care, is exhausting

That it takes a huge emotional and financial toll, not just on me but on family and carers

That specialist equipment and aids to help me cope are extremely expensive and don't last forever

That medical records are alarmingly incomplete especially before 2023

That even when you've given years of your life in service to the healthcare system it is oblique and sometimes deliberately obstructive

That no, I don't get a home rent free

That I practically rattle when I walk due to all the meds

I could go on!

That medically the word chronic means something different from the way it’s used in normal conversation - long term, not always terrible.

That im TIRED

That im not getting better

That it is annoying when everyone says ‘You look well’
Well i feel like shit
Just because i look ok, doesnt mean i am

When people ask me for favours / babysitting/ Dayd out/ months in advance and they dont understand when i cant say 100% that i will be ok that day

That whilst I look normal at work, to be there I do pretty much nothing else on evenings it the weekend.

I'm not boring with no interests. I have to rest to be able to work. I have few friends because I can't do much socially.

That constant pain is exhausting, and affects your ability to think clearly. (Well, it affects mine anyway)

Yes, I don't look ill but I have a chronic disease that is affecting every cell in my body and in the last year I have been in the ED twice because I was actually dying! Luckily with the right IV replacements and the right wound packing I survived. But it leaves a toll on your mental health as well. I'm lucky in that I know there is a surgical cure for my condition but I've had numerous scans over the last eight years and they still haven't found the so called benign tumour or tumours that is slowly poisoning me to death! There is a surgeon in another country who will hopefully find it as he's probably the top specialist surgeon in Europe who does this type of operation but trying to get medical information from the consultant in my country to this surgeon has been like pulling teeth. I have a lot of symptoms from this disease but chronic insomnia, chronic pain and chronic fatigue are the worst. Plus side effects from medication I'm on are not fun either especially the severe bleeding, from nose bleeds, bruising to haemorrhaging!

That some health problems aren’t fixable only manageable

esp when you’ve explained it countless times then they say oh you better get that fixed/sorted
🙈

Have you tried black seed oil? it's supposed to help with everything.

That I’m never going to be well again

I’d love to be able to let others experience even an hour of my illnesses

That chronic depression isn’t just “feeling a bit down”

It’s not something that is going to go away. Well, it did for a while, but it turns out I was on a dangerously high dose of ADs and I had to reduce it immediately

Something that is perfectly normal for everyone else - mass clear out, getting things in order - you may as well ask me to climb Everest

I have a chronic progressive condition and everytime i have surgery or any kind of appointment people will say so are you better now or they say you would of thought the drs would of sorted you out by now. People don't seem to understand not everything is fixable and that you can't always just go to the dr be given a pill and be cured.

I have endometriosis. I wish people understood that it’s not just a bad period pain for a few days each month. I’m in pain every day! And I’m exhausted.

Yeah, similar.

I've seen peoples faces drop when I mention we're going on a holiday weekend.
So I don't mention it any more or send postcards.

They don't understand that I've probably spent most of the weekend laid in bed in the hotel room!!
It's just nice to see a different four walls and a different bed.

You get to the point where you don't want to say anything about something nice that you've bought, because people are jealous that it's from benefits.
Even some family.

I have dialysis 3 times a week, not possible to have a kidney transplant, but even some of the nurses looked annoyed when I mentioned weekends away.
Keep my mouth shut now!

Actually nearly came to blows with a friend recently about this. She was going to cure my MS with physio ‘You’ve got to believe to achieve !’ It didn’t help that everyone else had been drinking apart from me and didn’t realise the situation was escalating until I got up and walked out.

That you very often can’t see a chronic illness, just because I look alright doesn’t mean I am.

People with chronic illnesses don’t bang on about it.

There is no miracle cure and if someone mentions Tumeric to me again, I’ll buy a bottle and shove it up their arse. 😁

That it's like constantly grieving the life I used to have, and it's relentless.

That I count the days until I can reapply for my driving licence, and every new seizure is heartbreaking because it resets the clock. I worked so hard to overcome a fear of driving and pass my test, and 3 years after passing it gets taken away by epilepsy.

That benign doesn't mean fine, and there's no such thing as a benign brain tumour (low grade is the preferred term). The amount of times people have said "oh if it's benign that means it doesn't bother you" and I've wished more than anything that I could swap with them and they can have the irremovable tumour on their brain stem instead 🙃

Just because I live with this condition, it doesn’t define me and I don’t want to talk about it all day at social occasions when I’m trying to have a nice time - particularly when others have had a drink and get brave enough to ask a load of emotionally heavy and intrusive questions.