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?

Pudendal Neuralgia. Probably you’ve never heard of it which is a common reaction I get from NHS! Trapped or damaged nerve in ‘sit’ area meaning I can’t sit for more than a few minutes at a time without pain. Pain free for about 30 mins when I first wake. No successful treatment or pain management currently available, dominates my life.

I had psoriasis which was on my forehead and ears, then arthritis started. I've been on a biologic injection which has stopped working and the rheumatology department annoy me because they keep delaying my medication delivery because my bloods come back with a low white cell count occaisonally.

Flat feet (though not for everyone who has them). They sound like a joke but can cause big, very painful problems (eg tendinitis, bursitis).

Live with a partner who suffers cluster headaches. Seeing a grown man crying like he's having an aneurysm burst in his brain and writh about the floor is horrific.

I have had ongoing exhaustion and sleep issues for my whole life ... Now curious about ME/CFS because I leave the house once a month and I'm in bed most of my life and it's depressing

my DH suffers from Arseholeitis. He says I'm being rude but it affects every aspect of his life. I can't take him anywhere. But it does come in handy when we get cold callers and salesmen at the door.

Thanks for the book recommendation!

i’m so sick of reading MN that people are being diagnosed with ADHD and autism when they have managed just fine all tbeir lives and they are frauds etc.

totally agree, couldn’t have put it better,
thanks 👍 😊

Not necessarily worse than people think and no where near some of the things on here but I have coeliac disease and when most people think about having it they just think of not being able to eat bread etc. Really, giving up my favourite foods is the least of my worries. Having to plan all meals in advance, missing out on social events (or attending and pretending not to be hungry because it's at a restaurant I can't eat anything at), being made to feel awkwardly by waiters rolling their eyes, not being able to go to certain countries and eat out, being poisoned at least once a year, being delayed in an airport for 8 hours with literally nothing I can eat, not being invited to dinner parties - those are the real day to day struggles. As I say, I can't complain compared to many disorders but the issues aren't what I expected them to be.

My friend got recently diagnosed with this - she will literally fall asleep mid sentence. I even have voice notes from her just cut off. It seems so dangerous.

This is the best description of caring for someone with dementia I've ever come across.

Its really hard 💐

Motor neuron disease. Trapped inside your own body. We've had it in the family and it's an awful way to go.

For me day to day EDS (ehlers danlos syndrome). Constantly having to think about how you walk and move encase you cause an injury. Even harder with kids.

How awful for you. I had endometriosis but no issues with flooding etc. just really bad pain.
I know someone who had life changing treatment in Bucharest.
I could find out details if you want.

Ficinothricegreat
just reading ‘loud’ brought tears to my eyes.
Being told I’m ‘over’ sensitive, or ‘over’ empathise (etc.etc.) but that’s how I feel !

Coeliac disease is a very underestimated disease. It’s not just about avoiding gluten but the ripple effect of having to plan ahead every single day .
My granddaughter is Coeliac and it sucks the joy out of parties,eating out ,being spontaneous about grabbing a snack/ treat from a cafe,having to quiz any one serving GF to be certain that cross contamination hasn’t happened and so I could go on.
The long term side effects is not just about the bowel, anaemia,fertility issues,eating disorders,brain fog/ concentration are all so overwhelming and we know this is a lifetime of avoiding the above problems.

Absolutely this 👆😞My grandchild diagnosed two years ago and it really is quite overwhelming and it’s forever.X

My darling mum had TN and it really was awful for her. The gabapentin knocked her for six and she was so unsteady . Really awful.X

Endometriosis. I was offered the pill and shrugged at about 10 years ago
2 years ago the pain started properly, not even when I was on my period. I would go from fine to on all fours unable to speak even with morphine
I threatened to stab my own ovary if they wouldn’t operate soon

when they came to operate this is what they found. it took 2 surgeons 8.5hrs to fix it and the endo surgeon said I must have been in so much pain for such a long time

Your large right ovary contained 3 endometriomas and was morbidly adhered to the right pelvic sidewall as well as your fallopian tube and rectum
Your large sigmoid bowel was folded over and adhered to the right ovary
Your left ovary is enlarged with 3 more endometriomas and again stuck to the left pelvic sidewall and rectum
Your left fallopian tube is normal, the right is dilated
You had endo lesions over your bladder

Dementia - so many people seemed to to think my MIL was 'just a bit forgetful'.

Gout, extremely painful and debilitating, has hospitalised one of my family members for a month, they couldn't even walk.

Tennis elbow - agony and super dangerous as you could drop a kettle full of water on yourself just by making your morning coffee.

My sister had HHT. She had part of her lung removed as a child and suffered horrendous nosebleeds. This was in the 1970s and my parents didn’t fully understand what she had been diagnosed with. I only discovered the name of it - Osler Weber Rendu, or HHT - after she died. Her nosebleeds used to soak right through her pillow and she sometimes had seizures. Mum and I attended a genetics clinic and my mum was tested for HHT but was found not to have it, or at least any already discovered variation of it. I think it may actually have come from my dad, as I remember him having nosebleeds and his legs were covered in what looked like AVM’s, but he wasn’t tested for reasons too complicated to go into! I have never come across anyone else with it until now.

Yes, this.

There's also the knock on effects of other conditions.
I have sleep apnea and was in a&e recently because of headaches.
So they gave me a scan and it seems I've one ventricle larger than the other because of sleep apnea.

I have an appointment with the respiratory clinic next week.
It just seems you're diagnosed with one thing,then suddenly there's a pule on.

As a mother of a T1 diabetic son I totally agree it is a life changer. He has a sensor now that he wears on his arm that monitors his blood sugars in real time which he says has helped immensely, but it is a struggle.

When I was diagnosed and trying to come to terms with having HIV, I remember trying to normalise it and said to my nurse that I was going to and think of it in the same way as if I had diabetes. The nurse responded that it wasn’t a comparison and that diabetes can be far more challenging to control.
Both conditions can be stigmatized however, often with incorrect assumptions made.

Not everyone benefits from new treatments, sometimes they are not appropriate for the type or level of the progression. I'm always very mindful of going into the specifics of how it affected my mum as it's not a foregone conclusion and I don't want to freak anyone out who's also diagnosed but she became incredibly unwell/disabled.

Migraines, have suffered since I was 15 to various degrees, they became chronic with peri menopause. I’d usually wake from the horrendous pain around 4am and would know that if I moved to get meds, I’d start vomiting and once it started there was no getting any meds in me. I’d vomit almost constantly for around 9 hours unless DH was home to take me to get an anti sickness injection (I was eventually prescribed Ondansetron wafers and kept them right by the bed!) I’d spend the day in a dark room, smothered in tiger balm, with cold wet towels on my neck and head, head in a bucket and every retch making the pain 10 times worse. I can’t tell you how many times I’ve been told to ‘just keep taking panadol and nurofen’. I was finally referred to a neurologist last year and now have monthly injections which have been life changing.

DD has hEDS and POTS, I can only echo previous posters as to how little understanding there is.