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 don't have one myself but my mum and several friends do; I wish people would understand:

• These conditions are often 'invisible'
• Some days are better than others
• Some conditions might need mobility aids on some days and not on others
• People with them might not be able to work despite being 'OK' for longish periods, but they are also unwell too frequently and too unpredictably to be able to hold down a job unless they have incredibly understanding employers
• There is often a lot of pain involved

That it is ongoing, and not just going to disappear somewhere.

That when I say how much I can work, that it is the maximum & to stop asking me to do extra.

That I can still drink wine, mostly to forget the pain.

That my I can’t do that I’m too tired is not the same as oh yeah I’m so tired too!

That painkillers don't always work and some days are worse than others.....pain wise.

How depressing it is, having never had MH issues previously.

How relentless it is.

That just because we mask and try to get on with life as best we can, it doesn’t mean we’re fine and well.

And this.

That I have absolutely no desire at all to hear about how your aunt’s neighbour’s best friend had exactly the same condition and completely cured it by eating eight satsumas a day.

That I may look 'fine' to you but I am, in fact, not fine at all! I may look like I could do something if I tried, but actually I know I can't and I will hurt myself or exhaust myself if I do it, and I don't feel like proving that just because someone else doesn't believe me.

Bah. I mean I am OK mainly because I am fairly socially isolated in real life (although not isolated online) but online people can't 'see' me and make assumptions!

I have an autoimmune condition which results in itching and soreness of an intimate nature. It disturbs my sleep and life in general. Try explaining that to strangers.......................It is here for life with the odd remission.

That with physical health conditions, most people seem to accept that they often can't be cured or treated successfully but don’t seem to think the same about mental health conditions.

"Have you tried?"....insert x or y. Usually incredibly basic things.

It's been decades, I've tried everything you're going to suggest and dozens of things you won't have even heard of.

And still do. I try new things all the time with the hope they might have an impact even though I already know my conditions are 'treatment resistant'.

When pain is the result of an injury you talk about it because it is remarkable. When it’s chronic you don’t- because it’s always there it is unremarkable- which is why I don’t talk about it.

Remission can feel like heaven. A flare up seems to hit harder each time because you hoped, wished, that it had gone away.

It can be randomly triggered but in ways that mean you can’t avoid triggers.

It is exhausting and makes things harder before you have even started.

It makes your life small. I felt bad I hadn’t organised things at half term but I was in bed for three days of it. And I remembered I don’t organise things because I never know if I am going to feel well or not.

I have this magical ability to compartmentalise the pain and push through for work but then I am exhausted at home once I get in.

Medication is a fine balance, side effects are a whole thing.

I make plans because I want join in. I might be unable to go. I want to, sometimes I can't.

I don't have the same amount of spoons as you do. We do not have the same energy levels.

If you have a virus or illness, I need to know. You may struggle into work with a bad cold. I will struggle for weeks for months when I catch what you have.

As others have said, that things fluctuate and are unpredictable. Just because I can do something one day doesn't mean I can do it the next one and certainly not that I can do it day after day consistently.

Yes, I'm still going to the eye hospital. Yes, I've my latest operation/injection/whatever. No, that doesn't mean I'm cured. Yes, I'll probably need more operations/injections etc. Yes, it is very tedious and I apologise for taking time off work, if you'd like to go in my place and have eye surgery under local anaesthetic, feel free. Otherwise, I'll be back in work in 48 hours.

This resonated with me as DD has CFS and gets fed up with people saying that to her all the time.

The pitiful reasonable adjustment makes is possible not easy.

That I don't want to take any medication because it will have to be taken for years. If I had started on the meds they wanted me to be on it would have been 37 years of non stop medication of at least 4 different types at this point. The conditions aren't going anyway and I've never met anyone with them and on meds that actually work.

Very well said @Sweetbeansandmochi

I work 50 hours most weeks. As a result, I was exhausted and did nothing over half term. I used to feel guilty, I don't anymore.

All of this and menopause is absolutely shit.

I haven't had 8 hours sleep in one go for more than 20 years. That takes an enormous toll on physical and mental health.

I have congenital hypothyroidism, I’ve been taking meds my whole life to control this but it in no means stops it. I still get a variety of symptoms everyday, I have learnt to manage them but most of them are invisible, so to others I probably come across a as lazy when in actual fact I’m just taking a respite from the crazy my body produces. Even though it’s becoming more common people still don’t understand the thyroid and don’t understand the stress it can cause. Even some doctors can’t help properly

My sister told me when I got pregnant that I would never have felt tiredness like it 😂
4 years of CFS at that point was 100 times worse than any of my pregnancies.

That I planned my life to be one way, to include certain hobbies and activities, and now they’ll never happen. And while “at least you’re not paralysed” is true, it doesn’t make me long any less for that old life I had.

Oh just that I don't want to talk about it. It's boring to me. I would really like for people to stop being surprised and remarking over the tedious fact I got an infection, again, because it happens at least 15 times a year and has for a decade. That's why I cover it up as much as possible. I'm so so bored of the conversation.

I've arranged my life and work around it perfectly well. I've priced it in, and would like it to just be an unremarkable fact of life, like other people needing the loo or sleep. And stop telling me to go to the doctor! What a fucking waste of my precious time.

How low it makes you feel.

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.

I feel like my chronic condition (which began when I was 16 years old) has robbed me of the person I was supposed to be and robbed me off the life I was supposed to have. I always wonder what kind of person I would be and what I would have achieved if I had been able to reach my potential.

Instead I take drugs every day with awful side effects that can only manage the symptoms, in the full knowledge I will be on medication for the rest of my life but it will never cure me.

The toll my condition takes on my mental health is worse than it has on my physical health sometimes.

Feeling crushed inside whilst putting on a smile for the rest of the world is exhausting.