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?

Hayfever and allergies and asthma
like having a horrible cold - in summer
asthma can make it hard to sleep. I can never run or even walk up hills

pcos - weight gain
hypothyroidism weight gain, hard to get treatment on nhs so bloated

asd - kid wont join any clubs go anywhere
adhd - in trouble from the first time they went to nursery almost (and didnt settle at nursery at 1 so we pulled them).
slow processing- noone believe you can be clever but work slowly, school crap at giving extra time.

migraine- dh has several a month, distrupting work and family life as otc meds dont always work

allergies that cause vomiting, hard to identify. Kid throws up several times a year. Miss school.

Not illness exactly but being cold all the time due to poor circulation- absolutely hate winter (it may be thyroid) hands and feet numb and painful. Even looking in the freezer too long. Ive had since a child/teen so camping etc way too cold.

Asd well specially pda. Out of school for 3 years. No school will take your child. Lost your job, life and friends and yet it’s never going to get any better. 24/7 carer with a kid that just wants to be at “home” arrrhhhhhh I’d rather have a different disability for my child.

(adhd / SPD / afrid / fatigue/ ecemza which was v bad now seems to be a walk in the park by comparison)

I would as well. I said to someone irl once and they said I wouldn’t be “me”. I was very happy to explain that I hate the current “me” any way.

There’s nothing worse than all the crappy “But your epilepsy makes you who you are, it’s part of you, it’s made you who you are today….” platitudes that I get thrown in my direction every now and then when I’m going through periods of hating myself and my life.

Why on earth do people think that’s a positive, uplifting or motivational thing to say?

I would far rather be somebody else entirely who doesn’t have epilepsy, than be me with epilepsy.

I would quite happily be someone else who is illness free.

Thanks for this. I’m not sure it would as mine is diet controlled it do you find you still have to watch your fodmaps with that? 🙏🏻

Hayfever. Months every year of constant itching, runny nose, streaming eyes, swollen eyelids, sneezing, skin flaking and exhaustion. I try not to take time off work but some days my eyes are swollen shut and my eyelids are red raw from skin flaking off.

People invariably think that I should be able to take a Piriton and get on with it. I have tried everything, from off-the-shelf remedies to prescription medicines. What works one year won't touch the symptoms the following year, or even week-to-week, depending on the pollen. Once, I was so desperate that I paid for a steroid injection in someone's living room.

My house has a HEPA filter in every room. I keep the windows shut during the summer and wear sunglasses at all times outside. I miss out on sunny days and days out with my DH and DC because I'm too ill or too scared to leave the house. Summer sucks.

Radiation-induced heart failure (RIHF). It is like living in a cage, where the chest/heart cannot expand. Interminable pressure and no medicine relieves it. But I suspect it is quite rare, as it occurs many years after mantle radiation used in the 90's and before for cancer treatment, so would only be prevalent in a very small proportion of the population, so I don't expect anyone to know what it feels like.

Hello @Diamondsareforever72. I'm so sorry you have endometriosis too. The pain is awful. Yes please, I'd love details of the treatment.

Please PM me.
(mine cleared up completely when I had an emergency c/s! It was the strangest thing.
I used to have the most awful pain, two weeks out of four.

After that? NOTHING! Not even a glimmer of cramp.
I’ll ask my friend for details. I know it was life-changing for her ❤️

My ASC and ADHD my line manager says mockingly we are all a bit autistic and the same about ADHD - Just be more organised he said do more lists - oh do just jog on!

When I said the lack of sleep is constant as my brain is always whirring he said ‘mine too’ just a total lack of understanding. He even looked for a ‘how to be less autistic course’ and wanted me to go on one - I told him to find one and I’d go on it - he couldn’t find one.

The head of my organisation once said in a meeting give the task to (me) as she is autistic and that’s her superpower. Errr say what again?? You are going up my workload with a load of other crap for no extra pay or TOIL because my superpower means I will get it finished - what the actual f* this particularly thing would have meant 3 days of 24:7 and no one else volunteered or they dared ask to do it. My autism means I would do it if asked and do it to the best of my ability. I battle this wolf daily (saying yes to everyone) and so the mumsnet phrases of ‘sorry that doesn’t work for me’ have been useful, although someone once came back and said ‘but it would helpful to us’ and I managed to say ‘but not to me!!’ And walk away.

When i was in childrens A&E with my DD, a mum came in with her little boy, i assume he was about 3.

He had the most terrible eczema and could not stop scratching, his poor wee face and body was covered.The nurses were giving him paper towels to use instead of his fingers when scratching but he was bleeding and clearly in the pits of hell.

The mum didnt know where else to turn, she had been to the GP and they had "done all they could" in her words.He couldnt sleep, he was exhausted but in so much discomfort ( that word seems too minimal but cant think of another one)

I wanted to cry for her, i really did, it was just awful to watch never mind for her and her DS to go through it and i remeber thinking that has got to be one of the worst conditions.

Type one diabetes without a doubt

Hidradenitis Suppurativa

Mine has settled down over the last 18 months, following significant weight loss from gastric sleeve surgery

But some days I get a flare up and it's quite debilitating, having a boil pop up from seemingly nowhere, in the most intimate of places, making walking difficult and painful - draining them is painful, and embarrassing - the smell can be awful. The holes/scaring left after repeated boils in the same place - my inner thighs are disgusting

And no one knows what causes it or how to treat it, antibiotics work for some, but you can't take them forever. It doesn't always affect overweight people either, so it's seemingly random, which is fun....

Another one:

Eustachian Tube Dysfunction

A constant windy, whistling in my ear, clicking sound when the tube pops open - it's infuriating and there isn't much treatment available

Apparently, it's a common side effect of weight loss surgery, as the fat that surrounds the tube is lost rapidly so the tube remains open - I was NOT warned about that at pre-op!!

I'm glad you found a break in the form of weight loss - I keep reading in support groups how much weight loss jabs have changed a lot of HS sufferers lives. Sadly for me, I'm a non smoker and 8 stone and have been most of my adult life - i've been on semaglutide (self sourced obv) for my eating disorder (ironic I know!) and while it's helped immensely with that, my HS has got worse. I've got chronic folliculitis too so that plus the HS is truly is a miserable existence. I've decided to put myself forward for as many clinical trials I can find within a reasonable travelling distance because I'm honestly not even arsed if whatever they trial me with pops me off at this point. May aswell get paid for it! Solidarity xx

Bruxism - night guard makes no difference but I do now get Botox on the NHS.
Migraines
Severe Raynauds - it’s horrendous this year, worst it’s ever been.

Me too! Though mine are restricted to my armpits.
im flying to see my mum on Thursday and just coming to the end of a flare up so boil has burst. I feel sorry for anyone sitting next to me on that flight.
I seem to be in a pattern of flare up, burst, drain. Rinse and repeat a few weeks 😞
I hate the randomness of it.
move tried many lifestyle changes to no effect.
It is essentially incurable, and INCREDIBLY painful at times.
I feel sorry sorry for my family really, because they often have to pick up the slack when I can barely function.
it’s soul destroying

Myasthenia gravis.
someone suffering with this disease may look and act perfectly normal BUT this illness is truly awful.

This is what I have. It's so weird to look well but at times be profoundly disabled. I am lucky to have a supportive family and employer but I know many who don't. It's horrible when rest is essential to survival but you just look lazy. I am done with people who don't know me well joking when they see me get in a lift to go up one flight of stairs

I have made my peace with having to hugely limit how active I am and have found ways to live a life within those limits. But it is awful when it affects my speech/swallow/vision. I am lucky it rarely impacts my breathing and I haven't had a full blown crisis, thats the thing that keeps me living life within tight limits.

I am so lucky I can work from home mainly

The worst but though was the 20 years living with the condition before diagnosis, hating myself and feeling so ashamed about the things I struggled with

think we've talked before...just know you are not alone..there are thousands with MG.
the worst thing you can do is try and make sense of it - there is none!
🪻🌷 atb my friend

Bipolar disorder. I don't share with many people that I have it. Most people only really think of the "manic" side that's more often potrayed in the media. The highs and erratic behaviour.

But its the depressive lows that are the hardest. I feel so, so low and empty nearly all of the time. I don't have a relationship or really any close friends because I feel worthless.

Yes, knowing others who "get it" really helps

Can I ask how you managed to get Botox on the NHS? I’m having to pay £400 for mine, one place quoted me £1700 for one session!

My dentist referred me to a consultant in maxillofacial at the local hospital. I have it every 6 months and have done for around 5 years!