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.

Solidarity with everyone coping with the hostile political environment on top of trying to survive through the day - I have a DH who is always fielding tactless questions and would never start a conversation by asking a new person what they do for a living as it can be incredibly triggering.

My Dad has had a chronic condition for many years. Things I wish other family members/friends/neighbours would understand are:

• Sometimes he chooses to do something knowing that he can do it, but will be in pain and will be exhausted and in pain for days afterwards. He does this because he's decided that the experience of doing that is worth the pain and recovery time (either because he gets a lot of pleasure from it, or because he thinks it's really important). That does not mean that he is being lazy/selfish/lying when he does not want to do less important things.
• People living with his condition (and I suspect most other chronic conditions) don't all experience the same symptoms, become more ill at the same rate or experience symptoms to the same extent/in the same order etc or even need the same medication. Just because he does not have the same obviously debilitating symptom that your wife's cousin's friend had does not mean he does not really have the condition. Similarly the fact that your other friend with this condition is able to run half marathons as long as she keeps on top of her medication does not mean that he just needs to speak a different doctor and do more exercise.
• The fact that you have watched a TV programme featuring someone with this condition does not mean that you know more about what will help him than he does after several decades of living with it and advice from consultants etc.

My hairdresser once told me she had the same thing wrong with her, she took 2 weeks off and some physio and was right as rain after. While I was 4 months into a sick note and couldn't move my arm.

I'm currently struck down with something else and it's absolutely RELENTLESS. I'm not sleeping, every movement I make is calculated to cause the least pain, standing hurts. Sitting hurts. Sleeping is impossible. Drugs aren't touching it. RELENTLESS.

That my T1 diabetes has nothing to do with my lifestyle or my diet or, worst of all, because I 'ate too many sweets as a child'.

And no, your temporary low blood sugar because you skipped breakfast or had an extra tough gym session is not the same as a hypo, and you don't, in fact, 'know exactly how I feel'.

Fucking rainbows, light and love! I've been given healing crystals by a well-meaning friend before. Altered that friendship quite quickly I can tell you!

Positive thinking my arse!

I’m amazed when people say to me “you don’t look as though you have M.S” how am I supposed to look, not all of us need a wheelchair!

I met my husband at our local pub last Saturday, he’d been walking our dogs (I drove there). Gorgeous day, sat outside, I was totally knackered, spoke to some lovely people. Talking and socialising is exhausting. I went to bed at 6pm, woke up at 1am, back to sleep at 2am, finally woke up reluctantly at 11.30am, I felt like I’d been hit by a train!? But I look normal 🤷‍♀️

That over 40% of adults in the UK have a chronic illness so we are certainly not alone.

I have RA too. When I told my parents, my dad immediately said that I wasn’t old enough.

He had no idea what it was, just heard the word arthritis and assumed.

I hate hearing "You're looking well". I know some people probably are just making small talk but very often I feel that it is a barbed comment, more or less code for "I don't believe there's anything wrong with you."
I heard it a lot if I met colleagues when I was on long term sick leave before I finally took ill health retirement. A lot of people seem to think that you're supposed to be either bed bound or fit for full time work and being spotted outside your home is some kind of crime, especially if there's any possibility that you might be doing anything remotelyvpleasurable.
And of course you can't win. Spotted doing anything other than attending medical appointments and you're clearly a malingerer, but not seen to be active enough and well, you're not helping yourself are you?!

I was offered talking therapy because no migraine medication worked so it's clearly in my head. As opposed to where? (I am aware that abdominal migraines are a thing)

We'll just ignore the fact that I can't take a lot of the medication usually prescribed

My employer: please be aware, the reasonable adjustment I have had for 8 years that you have just decided to stop will make it almost impossible for me to get to work the 50% in the office you require. Nothing has changed. Nothing will improve, probably get worse but you are removing it for ABSOLUTELY no logical reason.

looks like health retirement may loom…

Also have you noticed how women with health issues be it gastro or whatever
get treated less well than men

women are expected to put up and shut up

I’ve just had over 8hrs of surgery for it and people now seem to think I should be recovered a week later and cured
doesn't work like that!

Yes. A couple of years after being diagnosed with my 2nd autoimmune condition I was trying to juggle appointments and a new referral. I was being constantly fobbed off and eventually got in touch with PALS. The whole attitude was - well if you are that ill, why do you even want to go on holiday/plan an outing/visit friends etc.
Eventually I dissolved into tears and explained that having lost one child, I just wanted to be able to book a trip to visit the other one while I still could.
There is an assumption that if you claim illness, you better not try to do anything nice or fun.

I suffer greatly with Myalgic Encephalomyelitis (M.E) have done since I was 14 years old. It has totally blighted my life, it has taken away any chance to really make something of myself, the chance to have children, I don't have the energy for a partner. People don't understand how much it takes away from you. I get comments such as "oh I know, I'm really tired too!" Or "positivity is key!!" Seriously? Stick your stupid comments where the sun doesn't shine!! 🙄

I worry about DD's future because of this.

How long has she had it and how old is she? I'm 46 now, but some people don't have it for life like me.

Since 15. She is nearly 25.

It's the fluctuation that people really don't get. Very functional one day & very disabled on another.

That i am ALWAYS in pain, constantly, every second of every moment of every fucking day... even on my 'good days'. Those days just mean it's more bearable, it doesn't mean it isn't there.

That just because i was using my wheelchair earlier today, doesn't mean i was 'faking' it because i'm using my crutches this evening.. and vice-versa, i use whichever is more needed in the moment.

That no.. 'moving more' will not help. I just had a busy weekend where i did 30k steps over 5 days (it would usually be 10-15k) and now i am in a full pain flare, and even my rehab physiotherapist was wincing in sympathy during my session today because of how much i was hurting when he was doing manipulations and massage.

Even intelligent people struggle to understand that lifelong means lifelong.
They keep asking if I’m better or still having treatment, despite me saying that’s what keeps me well and alive.
Why is that so hard to understand?
it’s like they need a happy ending, or an end to the ‘story’.

also suggestions on how to boost your imminent system when I’m on treatment to wipe it out as it’s my immune system which is attacking me.

and turning up and hugging me an then announcing you have an infectious disease-I know I can’t stop you but please don’t laugh when it is serious when we can’t fight it off like you can .

So many of these resonate. Yes, to 'my tired is not your tired'. The utter exhaustion of CFS is impossible to explain to someone who has never had it.

Also the fact that it's very difficult to plan things because I have no idea how well I will be day to day. I never know how many 'spoons' I will start the day with - or how many spoons simple things like a shower will cost me.

I've tried explaining to friends/family that it's like setting off on a journey with a broken fuel tank/meter. I have no idea how much petrol I have in the tank or how far I'm going to get before I run out, although I know I've got probably less than a quarter of a tank full - and if I'm not massively careful it's like I've suddenly hit a brick wall.

Or that overdoing it, even when I think I'm pacing can put me in bed for 3 days, or a week, or even three weeks. It's impossible to know.

And to those who have a friend who was 'cured' or ask 'are you better yet?' the answer is 'I don't know. Some days are better than others, but I have no idea if my best days - on which I am so very far from 100% - are as good as this is going to get or not. It's been 5 years now and it fluctuates. So I'm probably never going to be back to 'normal'.

Again, I might look ok, but I'm not.

That you’re not malingering, over sensitive or in some way responsible for your illness.

The guilt you feel at repeatedly letting people down as you don't know how you will feel until the day

That my condition is invisible , although I may look fine in often in so much pain. Also the exhaustion that comes with my condition . I work nightshift as well so that doesn’t help