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?

I don’t fear many things, but I fear that.
God awful disease. A lady I knew died of it last year in her 40s.

I actually lost a long term friend a couple of years ago when she just wouldn’t let up with her “oh I’d love to be able to sleep for as long as your DD does”. Actually, X, you wouldn’t. She struggles to get to sleep, then when she does sleep she has sleep paralysis and the likes that means even if she sleeps for hours she wakes exhausted still.

She plays bingo often with people’s reactions.

Her recent battle was the DWP declining her PIP renewal as her cataplexy is “predictably unpredictable”. That was sorted at appeal, but should not have been necessary.

For me personally it's a combination of endometriosis, adenomyosis, perimenopuase, anxiety, depression, adhd, IBS and EDS. Individually they are all shit but as a combination I can truly say my life feels fucked right now but no one (particularly medical professionals) take me seriously when I say this.

For my poor mum it's advanced Alzheimer's - many people still don't realise the true horrors of this disease. I didn't before mum was diagnosed and now it's a disease which truly terrifies me.

I suffer from tinnitus as well.
Most times I can block it out.
But it can be over whelming.
I also have an unknown blood disorder.
They've done all the tests and it's just unexplained.
I just take my iron tablets and hope for the best.

Sciatica. I had the mild sort for years off and on and thought that was what sciatica was, but a while ago I suddenly had the most unbearable pain from my hip to my toes, and it lasted about a week. I couldn't sit or lay down or sleep, there was no break from the pain and nothing the GP prescribed would even touch it. It's all a blurred memory from the lack of sleep, but I reached a point where I just wanted to lose consciousness. I had an unmedicated labour and sciatica was far worse.

I came on to say ME/CFS. I have just met a friend for a coffee and am now absolutely exhausted and will not be able to do anything else today. I find talking knackering. The annoying thing is, I look incredibly well - bright eyes, shiny hair, good colour etc and yet I feel unwell most of the time.

ADHD - the thing that people don’t understand is that you can only get a diagnosis if you have struggled all your life. Again, I look like I have managed well all my life but I haven’t - my A-Levels went tits up so I ended up doing a degree that didn’t really suit me, my career has been disappointing (never had a promotion despite working hard and being valued), i am totally unable to manage my finances despite having the intellectual ability, I find any life admin or organisation incredibly difficult, I forget appointments, I have no understanding of the passing of time so end up being ridiculously early or late. Rejection sensitivity dysphoria causes me lots of problems - I tend to think people are angry with me when they’re not and I worry a lot about annoying people.

Autism - I have no understanding of non-verbal language such as facial expressions, I also cannot read ‘between the lines’ and this has made me very susceptible to bullying and abuse and indeed all my romantic relationships have been abusive. I have also had abusive friendships.

There is the occasional upside to neurodivergence but it is mainly a massive hindrance.

@Mercuryvenusyes, I’ve had the best available treatment. I still had flare up but I went 10
years without a relapse. So to relapse after being well for so long has been really hard. I’m on new treatment, but no idea if it will be as the old one.

Hyperemisis Gravidarum - not “just a bit of morning sickness”. Fortunately it “only” lasts as long as your pregnancy plus a few days at most, but I have never felt so ill, so miserable, so physically unwell, so enveloped in depression and overwhelmed by nausea and fatigue, so hopeless - with everyone around me telling me to cheer up, and wasn’t I lucky to be pregnant and I should be blooming. And everyone’s an expert too. it made both my pregnancies barely bearable. I had some very dark thoughts.

15 years later I still can’t bear the smell of ginger biscuits.

Triple negative breast cancer. It’s affected everything from my mobility to my appearance, hormones & potential longevity. I was diagnosed around the same time as Davinia McCall said she had breast cancer & I remember her saying her treatment was surgery, followed by 5 days of radiotherapy. I didn’t realise there were different types of breast cancer & different treatments. I’m having 6 months of chemo & immunotherapy, surgery & radiotherapy & who knows what after that.
I’ve got hardly any hair anywhere on my body & feel embarrassed to see people I know because I look weird. The chemo means I can’t walk some days & the low immune system & fatigue mean I barely leave the house other than to go to the hospital, which can be 3 times a week sometimes.
People keep telling me that I’ll be treated & cured & I know I’m so fortunate for that but TNBC has an increased risk of returning within 5 years & the fear is constant.
From the day I went to the GP when I found the lump, I was told to stop my HRT. I went into menopause over night, so have all the menopause systems, alongside the side effects of chemotherapy.
I’m in my forties, no family history of cancer/cancer genes, normal
BMI, exercised, 2-3 units of alcohol a week, non smoker, always used paraben free make-up & toiletries, low chemicals in the house & life long veggie with low sugar & ultra processed food. I’ve easily been eating at least 30 different plants/herbs/nuts & seeds for the last 7 or 8 years. I’d never had any health problems before this. I long for the day when I can feel the sun on my skin, swim in the Mediterranean Sea on holiday & try & feel some peace again. I’ve heard the radiotherapy can cause skin burns & you have to cover your skin at all times. Seeing the effect all this is having on my daughter adds guilt & disappointment, she’s missing out on so much & I worry how it’ll affect her being around me through this.

I feel your pain, it's no fun and most people haven't even heard of it which somehow makes things worse, it's almost like they think you've made it up.

I think it's a sliding scale.
When you have lived a healthy, pain free life and suddenly get something very minor but painful like a finger arthritis, it's the worst thing in the world and you dwell on it.
This was me until my 50s then a whole list of stuff arrived.

As you get more and worse things those little ones pale into insignificance.

I have mild asthma - no bother.
Developed osteoarthritis in my fingers 15 years ago. I'm never without pain in my fingers but it's just part of the scenery now.
SVT
Osteoporosis
Breast cancer - luckily no long term effects other than breast pain
TMJ, only mild compared to others.
Bronchiectasis
Palindromic rheumatoid arthritis . This is the one that can be so excruciatingly painful. Can come on unexpectedly, and strike any joint. If it's a wrist or finger joint it's manageable though I can't sleep or get any pain relief but if it's a hip one day I'm walking five miles and the next I can't even turn over in bed.

Type one diabetes. Suddenly having blood glucose spiking to 27 after drinking a coffee and not being taken seriously by the gp so you see another gp who knows absolutely nothing too so you are referred to the diabetes nurse at the gp surgery who then tells you she actually doesn’t know anything about type 1 diabetes and only works with type 2 patients, she then goes on to tell me I need to eat food and that’s why my blood glucose is spiking. Having to test and inject insulin repeatedly. Diabetes burnout is real. I have been through this after having my daughter, once she was born I became completely negligent with my insulin and glucose measurements. It’s mentally draining.

It can be very hard especially during spikes. I can ignore it (habituated to some extent) but I can never not hear it as it is loud and I can't hear from that ear so I can't filter normal noises through it. I woke up this morning and heard this weird noise. I was freaking out thinking what fresh hell is this when my DH woke up and said can you hear that weird noise. 😂 Was so relieved. I know I'm listening to weird buzzing, ringing, droning all day but I didn't want another noise into the mix. Always worry about my good ear too. Sorry you are going through it. I hope they get to the bottom of your medical issues.

Fellow sufferer here. When it flares it's horrendous isn't it. I spent most of 2025 covered head to toe, even inside my ears and scalp. It turned me into a recluse as I was embarrassed to go out other than to work. You have my full sympathy.

@haya130think I’ve relapsed again. 😬 but it’ll be ok. Started Ublituxab in December so will see how that goes. Alemtuzemab was amazing for me!

ME/CFS (Chronic Fatigue Syndrome),
Fibromyalgia,
Post Viral Illness including Long Covid
Sarcoidosis

All can be extremely debilitating and impact wellbeing.

Coeliac disease. A lot of people think it’s just an “allergy to wheat” but it’s an autoimmune disease. My youngest has it and never really feels well though sticks rigidly to a gluten free diet

You can take HRT which lessens their impact. I think with some of the other conditions like ME it’s worse as there is no treatment.

I am often fairly upbeat about my condition to colleagues/friends /relatives because I don't want to drag things down/feel the need to put on a brave face /don't want to be seen as many (or, at work, incapable).

I wouldn't read too much into that

Can you clarify which type? Or both?

Had steroid injection on the first one, made no difference at all. Ended up taking a massive concoction of pills and 3 hydrodilation procedures before surgery. Altogether took 3 years to recover. Second one is now about 12 months in, steroid injection seems to have reduced the pain slightly to 'manageable' with OTC painkillers but still immobile with occasional spikes of fall-to-my-knees pain if I get jolted in the wrong way.

Unfortunately the 'cant you just try...' suggestions make me feel worse emotionally - I have tried, and would try anything to reduce my dependence on opioids, sleeping tablets and laxatives (see opioid side effects) in order to brush my hair, wipe my arse and get some relief from the chronic pain condition that has robbed me of my mobility, sleep and humanity for the best part of 5 years.

Have you tried the Mirena coil for it? Absolute game changer. I remember having to live like you describe and it now seems like another lifetime.

I do appreciate it doesn't suit everyone, I almost had it taken out after a few weeks as it was uncomfortable bt it changed my life.

As others have said ALS absolutely terrifies me and I can't think of much worse.

Crohn's/Ulcerative colitis is also an awful thing to live with, my friends son has it and he can barely leave the house and is a shell of a man because of it.

Hi, yes I tried two and the amount of bleeding expelled them both. The gynaecologist still tries to push the Mirena on me despite this!

Sjogrens Disease.

People (including HCP) often think its just dry eyes and mouth.
Its much more, fatigue, joint pain, hair loss, severe memory issues, and capacity.

The part no one talks about is the vaginal dryness.

I haven't worn a pair of jeans in about 2 years.
I often am in so much pain I can't wear underwear.

I can't swim, exercise or even walk for long lengths of time.

I use 2 types of topical estrogen, I use hydromol externally about 4/6 times a day and a moisturiser pessary every night.