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?

This thread reminds me yet again how much of a privilege it is to be living intact and pain free (at least for now)! I will never take that for granted.

Eczema has been my lifelong cross to bear, especially during adolescence. Mum would wrap me every night in bandages soaked in coal tar, topped with tube bandages. They would come off in the night as I'd tear them off to scratch! I can relate to the blood-soaked sheets, clothes, etc and the general isolating misery of it.

Corticosteroids got things under control but left my skin very fragile, which creates a vicious cycle of irritation. My huge discovery last year was this Aveeno cream. It is light and easy to apply, but far more moisturising than more occlusive things like Vaseline, and it has ceramides that protect the skin while it heals. Since using it all over (including face) I have no need for anything else, including steroid creams. This is an absolute miracle to me, after a lifetime (>60 years) depending on them.

I would urge anyone who has skin barrier problems to try it.

https://www.aveeno.co.uk/products/dermexa-daily-emollient-cream

(Edited to add: Moisturising the skin is half the battle - the other half is washing gently. Aveeno also do some excellent shower products. I hate to sound like an ad but I am absolutely evangelical about this now and want to kiss whoever invented it all!)

There is no cure for psoriasis. It may go away for a while, it may be controlled, but it may come back. Sorry your son has this condition. I've lived with it since I was 7. Now also struggling with fibromyalgia, lichen sclerosis, ADHD, depression, thyroid problems... I'm just tired of it all.

Surprised to see MS mentioned as it's one that I always think people do realise how bad it is

A friend of mine has Ehlers Danlos Syndrome and its comorbidities, is an ambulatory wheelchair user, needs a feeding tube on and off, has been near enough housebound for the past decade. Her family have always seemed to ignore it all and treat her like she's a hypochondriac and lazy, whereas when her sibling got diagnosed with MS a couple of years ago, their whole family rallied round and offered help, sent flowers etc. I felt really sorry for my friend to be honest, I could tell she was really hurt by it

I have this. The only product that works for me is Xailin (available on Amazon) - there is one for day and one for night time. It has changed my life!

Nobody chooses depression. Just like nobody chooses other conditions.

I hope people have kindness and help in their lives.

My God.
I just want to send love to all those suffering here
💐

I agree with all the conditions here - very debilitating and poorly understood!

I am going to add Epilepsy - son recently diagnosed as a young adult and the seemingly out of the blue diagnosis, unpredictability, immediate life changes etc. has been completely overwhelming. I also work with people at the severe end of epilepsy who have multiple seizures a day/night and the severe injuries they can get is shocking. It is not just the tonic clonic ‘shaking’ epilepsy either - there are so many seizure types as well. My learning curve around Epilepsy has been huge and eye opening!

Please ask to switch gynaecologists. There are lots of excellent, compassionate ones out there and you shouldn't have to put up with one who doesn't care on top of the condition itself.

Was completely broken and at the end of my tether yesterday (so far this year there have been 9 days I've not bled) and I'd spent most of the day before in the shower passing clot after clot. My gynaecologist is amazing. He's given me his mobile number (not that I would ever use it), and goes in to bat for me despite what other doctors (mainly A&E and GPs i.e. not specialists) think is common sense. He takes what I want over what's easy.

I was coming on to say endo and uterine disorders. I really hope you get some relief.

So hard as a toddler I can imagine. My son was diagnosed at 14 and that was hard enough. Now 20 and manages it really well independently. There is light at the end of the tunnel but I know how overwhelming it can feel.

Fibromyalgia.

Plenty of people out there think it's a made up illness, and still more assume it just involves pain, but the speech issues, memory problems and crushing fatigue can feel even more demoralising than the pain at times. At least pain is something everyone will have experienced at some point and can relate to.

Thanks for the idea but I realise my post made it sound like I had tonsillitis and fissures together. The tonsillitis was years ago and now thankfully resolved and the fissures surprisingly went away after giving birth! Maybe all the blood down there to heal everything else was beneficial?!

I agree with frozen shoulder. Absolutely debilitating condition, in the top 10 most painful chronic conditions (including childbirth which is generally done within 48 hours from first twinge to placenta delivery whereas frozen shoulder lasts months and months before beginning to ease).

I couldn't brush my hair, wash it properly, drive, carry anything, use a fork, hold my kid's hand for fear of them pulling my arm, shave my pits, wipe my bum. I was taking ALL the drugs but was still waking with pain literally dozens of times a night. Took 4 months off work as I just couldn't function, destroyed my mental health. Took 2 years to begin to feel like I was anything close to normal and I'm now in the throes of the second one going.

My hairdresser told me she'd had it but took ibuprofen for 2 weeks and was fine after - no love, that's not frozen shoulder...

Right there with you Booooom. I used to think it was mild or even (and I hate to say it) 'yuppy flu' but now I know different. Every single day is a challenge, it's hard to plan anything and when I do it's with caveats. When I'm crashing I'd actually rather not be here at all. Then you have to deal with people who don't get it or don't believe you. Then there are those who think you are lacking in strength and should power through and 'beat it' just like they would! Absolute nightmare

I think any of the poorly understood conditions that garner little sympathy/dismissal and often have a layer of sexism piled on top too- with it being implied the pain and suffering is all in the person's head

So ME/CFS definitely

I have Myasthenia Gravis and I know several people with ME/CFS and there are a lot of overlaps (we all love life and don't want to spend it inactive), but I am "lucky" that the mechanism for my condition is reasonable well understood and there are tests for it and some treatments, and there is a really strong understanding that rest and pacing are key treatments. It's devastating seeing how people with ME/CFS are ignored or judged or pushed to "think themselves better" etc.

And MND/ALS. Watching a loved one gradually lose their physical ability bit by bit was so utterly devastating.

This has been such a hard thread to read. It's eye opening to realise how many conditions produce so much struggle and suffering

I have read all of this thread and cannot imagine living with some of the conditions described, particularly in children. There was another thread yesterday asking for the small things in life that bring joy. As you would imagine it wasn't material things or anything associated with wealth.
That thread was uplifting and this thread has been informative and demonstrates that without good health life is very hard indeed. Thank you to everyone who has shared their experiences.
I think mumsnet is dominated by ridiculous content, often centred on how rich people are a s well as the insufferable posts of people taking offence over the slightest issue. So to read two threads in two days that can provide meaningful information and add value in a way that supports people is really wonderful.
My issue is life long anxiety and depression created by childhood trauma, it has informed a !it of my decisions and not in a good way. I often wonder who I might have been if I had not been affected by this.
in contrast to some of the posts on this thread I'm fine. Love to everyone going through the unending agony of crippling conditions. I will think about the child with T1 diabetes and their fabulous mum for a long time and also the cruelty of psoriasis for the poster who described it in a way that really showed how life affecting it is.

A ‘benign’ brain tumour. People just assume oh it’s out and you’re fine. You’re not fine. For many people it’s a death sentence. It’ll grow back and/or mutate to a higher grade and it will kill you slowly over time. You might be lucky and get 10 years. But even then you’re going to die eventually.
If you’re lucky enough to get the ones where it won’t grow back you’ll still be left with crushing fatigue, balance issues, memory issues. You’ll probably never be able to work again. Life after a brain tumour diagnosis is never ever the same

I came to say exactly this. Greetings to you my fellow itchy, Dupixent has changed my life.

Though thankfully not dangerous, vestibular and ocular migraine sucks.

I've had periods of 8-10 weeks with a permanent migraine, visual disturbances, and being so dizzy that I have to vomit in the kitchen sink when I'm trying to chew a sandwich (the motion of chewing caused dizziness). Plus increasingly painful tingling from my jaw to my scalp (including my ear, which bothers me the most).

Waking up every day with the feeling of a heavy shadow always in one spot in my brain, is depressing.

As my neurologist says, migraine isn't a headache, it's a neurological attack on your body.

Gout - I get it in my feet every now and then. It is the absolute worst pain - just moving my foot is agony and walking is a struggle. Even when I am not having a flare up, my feet are in constant pain. Sometimes it's so bad I just cry and cry, and I'm broken-hearted that I can't go for a walk on the beach with my lovely dog.

It’s truly awful x

there seems much more awareness recently but I knew a boy in primary school who’s mum got it. Seeing how fast she deteriorated and then did just blew me away even at that young age and it’s always stayed with me

Chronic migraines 😫. I think has to quite a cruel one. While I know other conditions can be hard to treat its a Chronic pain condition where you can't take painkillers.

They limit you to 2 days a week, either painkillers or Migraine treatments and if you take more then that then blame you for taking to many painkillers and making it worse. I'm fairly sure I've never had Migraine over use headache as when I've tried to go weeks without taking anything it makes no difference. I have to chose on which day of the week I want to be able to function and take drugs accordingly. The new CRGP's drugs are hard to access although one is working OK ish for me at the moment, there is no guarantee that will continue as every preventive treatment I've tried fails at some point.

Oh and I can't take pain meds like codeine at all as it can make the Migraine worse. I've had a back problem recently and can't just take painkillers for it, I've just had to put up with it.

Ditto on eczema. I'm lucky it's localised to my hands - but it's so unforgiving, it can clear up for a day or two, then one mistake (wiping a surface without gloves, not rinsing soap off properly), and it's back to a bubbly, bleeding, mess.

I had this after my second baby. Crying in pain whenever I went to the toilet. Thankfully never had them since