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?

Had this version of Reynauds postpartum, during/after breastfeeding. The PAIN!

Thyroid issues. I was born without one but the symptoms can be de habilitating. Everyday is a lucky dip of symptoms. Never know what’s gonna pop up, Even with the medication, the symptoms don’t disappear they just make them easier to live with. People often don’t think thyroid issues are severe because it doesn’t look a certain way but they can be very severe.

Also adding (although endo still tops the lot for me)

hidradenitis supprativa - just takes over your life with constant dressings, antibiotics, painful lumps in awkward places and doctors that don’t understand it
Long term sciatica - mine went to cauda equina and it was just relentless pain. Going numb was a relief

I’m so sorry to hear this. I’ve managed mine very effectively for the last 12 or so years but prior to that I was a mess - no clue what was going on. My quality of life is much improved. If you’re interested there is a group called IBS Support (Official) on Facebook. It’s one of the most moderated groups on Facebook, dealing exclusively with the scientifically proven ways of managing IBS. Other groups exist but discussion isn’t usually terribly useful, so it’s worth making sure you’re in the right one. Good luck.

There’s nothing GPs can do, I’m afraid, it’s all about management and finding your triggers. It took me a very long time to get to a stage where I could think about managing it - it’s exhausting.

Severe OCD is debilitatingly hellish. Some people think it's just about being clean or tidy. It's nothing of the kind.

It's time consuming, guilt-inducing, potential -stealing, relationship-preventing, employment-ending, possibly homeless-causing, utterly isolating hell.

I wouldn't wish it on anyone 😔

Great and accurate description

I have crohns, Its certainly debilitating at times and incredibly stressful.

Oh I totally agree. Ruined dd's life.

Agree with psychosis. One minute they are their lovely selves and then they are a stranger and you feel like slapping them out if it, but you don't and you can't. You just have to wait.

I think most of us put on a huge act to the world that we are fine and everything is fine and we are coping, but behind closed doors it’s a different story.
That in itself is exhausting.
I have always tried to create a fun, chirpy persona when I’m with friends and extended family. I do everything I can to downplay my symptoms or tell people “oh yes, I’m fine” when they ask. The reality at home is much different. I’d say only the people I live with know how bad my narcolepsy is, but even then they still don’t fully know exactly how it feels inside to be fighting it 24/7.

It’s very true that you never know what someone is going through behind closed doors. Life isn’t a bed of roses for most people.
Ive learnt a lot from this thread, thank you all x

Heart Failure 😞

Rett syndrome. My friend's DD has it. It's been awful watching her develop and then lose her skills

(Colleen Rooneys sister had this)

Sorry to hear about hEDS that’s debilitating enough on its own.

did you suffer episodic or chronic cluster headaches? I started with chronic ones in June 2024. The got more and more frequent until I was religiously suffering 3/4 times a week at the same time every night. The eye biting would remain all day some days.

I started verapamil and after getting to full 980mg a day they have subsided but I’m down to 820mg a day currently as my BP and HR were far too low! I’ve not yet gone 28 days with no symptoms but haven’t had a full blown attack for months.

id love to think I’ll go into full remission even if just for a few years. 🤞

Another epilepsy sufferer here.

On the outside I look fine but the reality is that it’s completely ruined my life.

Medications that give me horrific side effects.
Loss of my driving licence.
Loss of my freedom and independence.
I’ve lost my career.
I can’t work.
Loss of my financial independence.
Reliant on benefits and my husband’s income.
Extreme exhaustion/fatigue.
Children who are too scared to be alone with me.
I’m scared to go out in case I have a seizure.
Scared to be alone in case I have a seizure with nobody to help.
Scared to go to sleep in case I have a seizure in my sleep and I die from it.
Loss of friends, loss of social life.
Loss of peace of mind.
Anxiety/depression and needing medication for that too.

Knowing that I have this condition that I have no control over, that one seizure could kill me, that there is no cure and I have to live the rest of my life under a constant cloud.

I wake up every day thinking “Will I make it through the day without having a seizure or am I going to be ok one minute and then suddenly wake up and find myself surrounded by paramedics or in a hospital bed? Or worse still, not wake up at all?”

And knowing that if I do have another seizure, all that’s going to happen is I’m going to end up being given even more medication every day that makes me feel more crap than I already do with absolutely no guarantee that it’s even going to help.

Meanwhile, people think it’s a case of every now and then I have a seizure, I might feel crap for a day or two and then I jump back up and carry on with life as normal. People don’t have any idea just how life changing the diagnosis is.

A vote for anorexia, which I think has been mentioned already. The constipation and resulting haemorrhoids, the constant screaming in your head to EAT EAT EAT vying with the equally loud screaming DON'T EAT, the hair loss, the absolute terror of social occasions. But the worst bit by far is the cold - I genuinely thought I was going to freeze to death on some of the colder days over the winter. I could have several layers on, including thermals, and those heated pads in my shoes and gloves, and I still couldn't get warm.

I think the worst parts are that some people think you're just doing it to yourself, so if it's so miserable, why don't you just eat normally? They think you're just doing it for attention. It's actually a bit embarrassing sometimes being a middle-aged anorexic because it's so associated with teenage girls.

And I have often had people who don't know me that well complimenting me on my figure (including health care professionals) because I am only marginally underweight. That says nothing good to me about the way society views women and their bodies and health. Even though I'm not skeletal, I do look like shit in that my face is drawn and I have loose skin and bulging veins in my arms and legs. I don't understand how anyone can look at me and overlook that stuff and just see thin = good.

I remember some eejit on another forum saying it's not a disability and you'll be fine if you take your medication. I was on medication for migraine typically used for epilepsy. The side effects are awful. I'm deaf in one ear because of it. I remember someone on Facebook saying their DH was on it and ended up in hospital because the medication gave him seizures. I've never wanted to get off medication fast enough because of the side effects

I've had epilepsy and I'm lucky to have grown out of it. But I'm left with the memory problems

I agree with being undiagnosed. No one gets how isolating it is. I'm lucky my consultant is determined to find my condition a name. But frustratingly she's not close at all. Every test is clear.

yes, the sensors do seem to be fragile beasts. My son now uses the type of strapping athletes use (the sort that sticks to itself not skin) to keep his from being knocked off. Two are supposed to last him a month but he’s had them both break after a couple of weeks, then it’s back to finger pricking all the time to test sugars until he can get new ones.

He’s had the sweets comment too……no, his pancreas has checked out permanently for no apparent reason.

Even on a type1 facebook group one poster wss wittering on about how she was managing her type1 diabetes via diet and didnt need insulin ...

Psoriatic arthritis and psoriasis:
awful cracked and flaky skin, shedding, looks like I’ve got dandruff. I get inverse psoriasis too so under breasts/groin - so sore and cracked, weeping … ug!
them I developed psoriatic arthritis. It’s a bugger to diagnose but I was lucky as my consultant saw my joints swollen so got help, often it’s missed as it crops up randomly and can affect any joints, often negative blood results so it hides well!
Fibromyalgia / CFS : absolute fuckery conditions, pisses me off royally when dick heads say fibro is made up 🤬🤬🤬 or with CFS - just get some sleep, try valerian tea / yoga etc
enthesitis / tenosynovitis - chronic pain too, as with fibro and PsA … it’s left me with ill health retirement at 54

My heart goes out to everyone here who is in pain .
I am very fortunate that my health conditions don’t cause me pain .
I have eosinophilic oesophagitis and the trigger seems to be environmental .
It is like having seasonal reflux if that makes sense and I went through a phase of not being able to swallow many textures of foods before I was seen by a gastroenterologist and given a diagnosis of sorts .
i lost weight very quickly and was so tired ( and pissed off at going to bed hungry )
I also have allergies and asthma which often co exist with this currently have awful allergy brain fog, tired , puffy red eyes etc .
That is frequently invalidated by many who think it’s a bit of seasonal sneezing in summer .
oh no it isn’t ! Symptoms can be from March through the year and if the pollens don’t get you the dust mite will

Agree when dickheads claim fibro is made up. Same dickheads who claim the same about CFS. i went to a dietician to try and get advice and she told me what triggered her to retrain from accountant to dietician is she had CFS. She said to me 'Well, face it- fibro is like CFS with additional appalling pain'. Such a simple acknowledgement actually made me well up totally unexpectedly.

My fibro has seen me go from a professional full time role to taking 3 months off due to illness, to going back part time to not being able to manage that, to going to an ad hoc temp role to now being able to manage that to trying to volunteer one morning a week to not being able to manage that. And I am not even 'that bad' . I have a friend who is 10 years down the road and is on ALL the drugs and he is utterly dysfunctional. Lost his job, lost his relationships, now lives in a flat share and his own family still think he's making it up.

** also, my GP keeps saying fibro 'isn't progressive'. Well, anyone I know who has it knows it is.

Well to be fair my RA was dismissed for years because I was ‘too young’. I started going to the doctors with joint pain at 15. Told I was unfit, too thin, too young, a hypochondriac. I cried with relief when I was diagnosed at 34.

My friend has a similar story with her RA
And I went backwards and forwards to Drs and hospital for nearly two decades before I was finally diagnosed with Myasthenia. It makes me so cross

I am really Be Patient by Tilly Rose at the moment and it very powerfully tells the story of medics refusing to see anything other than an anxious woman even when symptoms are very real

Yes it’s infuriating.

i was even told I had a low pain threshold. Turned out I had quite a high one to be putting up with 20 years of pain. It’s still painful now obviously, (I’m in my 60’s) but I’m so cross for that young girl/woman that was dismissed.

Strangely it was having repeated miscarriages and being referred to a miscarriage unit, that realised I had Antiphospholipid. She referred me to a rheumatologist, who then diagnosed me with RA. My inflammation markers were so high in the high 100’s. One blood test when I kept going to doctors would have made such a difference.