Which conditions are far worse than most people realise?

[LittleRobins]

I’m curious as to what people suffer from, or have seen others suffering from, that is actually much worse than people believe? There are so many conditions that don’t seem to be fully understood until people go through it themselves.

For me it’s TMJ disorder (bruxism). I was told around 15 years ago by my dentist that she could tell I was clenching my teeth and needed to wear a bite guard. I did so (and have done so ever since) but didn’t understood at the time how many issues this causes. I’m now in a position where I have lost several teeth (clenching causing a swollen periodontal ligament and eventually killing the teeth and/or causing cracks so root canal is not an option). I am in pain with my teeth and jaw every day.

Around 80% of nights I either get no sleep at all or around 3 hours sleep due to the pain that starts when I clench upon getting into a deep sleep. I live in constant fear of losing more teeth. I am due to have jaw surgery soon (plus Botox) which has an horrendous recovery which I am dreading but hoping in the long-term will benefit. The discs in my jaw are both in completely the wrong place due to clenching which leads to jaw locking and has now started to affect my nerves so I get random numbness in my lips. I have two toddlers who I feel immense guilt for because I feel like I’m not being the most-present mum I could be because the pain is hard to push to the side.

But all of this has got me thinking, what other conditions are people going through that are worse than most others believe?

Septicemia and also a tooth/gum infection!

Both of which are absolute agony! I know, as I've had them!

SPD- completely took any joy I was feeling about being pregnant away. I was on my own as my daughter's father left me at 3 months, and lived on the second floor, no lift, no car, nobody at all to help. I couldn't walk more than a few feet at a time for 4 months. Basically housebound and crying non stop. Awful.
I'd read about it but I had no idea how bad it was and of course you never think it'll happen to you!

I have palindromic rheumatoid arthritis (currently in remission 🤞🏼).

It means it comes on four 24-48 hours and stops.

I look and move so well the rest of the time that nobody who hasn't seen me believes I'm crying with pain, wearing splints and using crutches. I don't know when it will hit, so people think I'm making excuses if I say I can't commit to doing things at a future date.

Me too, sepsis from a jaw bone infection! Solidarity. I hope you're ok now.

Diabetic leg ulcers are very painful and sting like mad. No cure really but if infected they give anti-biotics. If not just compression bandages changed weekly by nurse but take weeks or months to heal if they ever do.

This. I suspect this thread is very helpful to all who post on here as it stops people feeling quite so isolated. Thanks for creating it.

This. I will quite literally still be reeling from and ruminating over rejection for years upon years

Separate post to make comments easier.

I have partial sight loss which people can't spot. I can't see at ground level or to the side on my right. Loose dogs and dogs on extendable trip leads are a huge problem.

I am sick to the back teeth of being told by dog walkers either to wear a sign or walk somewhere else when I try to explain why I need them to call their dog away from me.

My child is on IV nutrition. This sounds like my inner dialogue. It made me sad to hear someone else with it.

I’m going to take a punt on this and suggest this is medical sexism where many serious conditions which affect women are put down to ‘anxiety’ 🙄

This 100%

Yes this is a brilliant thread, I also really appreciate everyone sharing their experiences as I've learned so much! My mum had progressive MS and Alzheimer's so I've seen first hand both how they can affect lives and also how little people understand conditions they don't have experience of, but it also made me aware that there must be hundreds of conditions people are living with that I know next to nothing about. Much love and support to everyone who's posted.

I’ve got all sorts of auto immune stuff going on but by far the worst aspect of out past the swollen joints, being bed bound occasionally not rather the horrifically dry mouth and eyes. You can’t talk when your tongue mouth and lips are like dry sand paper. Your throat burns, your digestion is affected. Your tongue splits, bleeds and becomes ulcerated. You can’t talk. Your teeth decay and crumble very quickly without saliva and I’ve had some just fall out. Don’t get me started on how how it affects your eyes. I developed a corneal ulcer while I was doing my uni degree and with the oral stuff, the constant eye discomfort, light sensitivity and splitting head aches was enough to push me to consider suicide. Everything else is a walk in the park in comparison. I’d rather have 12 hours of gall bladder pain and removal surgery once a week for the rest of my life than have single flare up for a week again.

Crohnes and coeliac disease , so painful and affects every day life. The coeliac disease affects every meal and holiday choice and crohnes not only causes ulcers along the digestive tract from mouth to the other end. You can also get ulcers in your eyes and skin it's v painful . I've had friozen shoulder as well which is painful but it does go. The other two, you're stuck with. Both give you bouts of what feels like severe food poisoning and incontinence and make you unable to leave the house as you are going to the. Loo 7 times an hour.

Yes this - sex has been painful forever and I have nearly been hospitalised n delirious cos of this. I am happily not having a relationship any more and couldn’t stand anyone near me now but I wonder if life could have been different.

I was diagnosed with this on the basis of a raised ESR and so was a friend.

It actually turned out once the other blood tests were in to be rheumatoid arthritis not polymyalgia rheumatica for me.

My doctors surgery was well on the ball with it and so is hers, so that's at least 2 out of 3 in our town, luckily.

I’m so sorry to hear that - that’s tough. Does she have a dietetic / Gastro team involved. Proper nutrition and growth at this stage is vital for good long term life outcomes - and there are lots of options.

My child is in nappies and has liquid poo. She has an ECHP and one to one care at school.

Sjogrens? Horrible disease.

Hemiplegic migraines - one minute you're okay and the next you're half paralysed (it affects one side of your body) and can't see.

I have voluntary given up driving because it's so incredibly dangerous and unpredictable

diabetes
it's relentless, even with moderm medicine and wireles measuring

Sepsis - It felt like death would have been easier.

Any condition that causes chronic pain is hideous for the sufferer, I think.
For me, it's depression. You live a half life much of the time. People still don't understand it, despite all the awareness campaigns. They're either embarrassed for you somehow and talk about your illness in hushed tones. Or they're disbelieving when you say you physically can't get out of bed/get dressed/smile/do whatever it is they want you to do because they're sure they can pull you out of it if only you'll try things their way.

Sciatica. I used to think it was just a bit of pain in your back/leg. I’ve never experienced pain like it, and I’ve have gallstones!
I was off work for 3 months and in the beginning literally couldn’t move from the bed.

Yes, I have loud constant tinnitus. I went suddenly deaf in one ear nearly 5 years ago and the tinnitus has been really hard to cope with. It can't be masked, it has various tones and it reacts to external noises and gets louder in noisy environments. I developed a different tone of tinnitus in my good ear last year (it's more of a rhythmic bass drone) which comes and goes but it can be hard going at 3 am. I really thought I'd never be happy again when it first happened. I just couldn't escape it! I'm coping much better now but I really miss silence.

Parkinson's. Not just tremors! My DH, diagnosed at 48 doesn't really shake. But he falls a lot, can't concentrate, needs help to wash, dress, grt out of chairs, use the loo. He's incontinent. He wakes me a lot, especially early morning. But the worst thing is the dementia. He hallucinates a lot which confuses him, and upsets us both when he thinks im 'carrying on' with other men. He obsesses about ridiculous things and wants me with him all the time. He knows his mjnd is going and has periods of lucidity - he was a very clever, articulate man and now can barely finish a sentence. We're both 61and i wonder how much longer i can cope. I work full time (sanity!) and my whole salary+ goes on carers 6hrs a day. We're both pretty depressed quite honestly.
This is a heartrending thread - so much mental.and physical pain 💐to you all