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?

Migraine. It’s not just a headache, it’s a complex neurological condition. I don’t even get a headache with mine. My whole side goes numb, I get dizziness and nausea. It was originally diagnosed as MS, with MRI changes, until my lumbar puncture was clear. But yeah, not a barrel of laughs.

Psoriasis.
There is nothing like getting into a shower with 1000 skin cracks all over your body. Showers are so painful.
There is also nothing like waking up in the morning and having to peel the duvet off your skin making new wounds in the process because it fused overnight to a fresh wound.
Everything you own is covered in blood.
People stare at you in the street
You have to cover yourself in oily creams that you then need to wear full long sleeve pyjamas to bed in the summer because you cant ruin yet anothet set of bed sheets with oily stains.
You cant regulate your body temperature so mid summer you can go from being too hot to too cold.
Everywhere you sit you have skin flakes and sitting in a customer meeting desperately trying not to flake everywhere is embarassing.
There is no cure just horrible debilitating drugs that give you nausea and sickness and thrush.

Oh I hope I haven’t worried you, I’m quite an extreme case! But yes, definitely wear your bite guard and that’s usually enough to help most people.

I also agree with PGP. I remember reading about it and thinking how difficult it must be but when I actually had it during my second pregnancy it was a huge eye-opener! Not just the extreme pain but the guilt of not being able to play on the floor with my son or take him for walks. I felt the last few months of it being just the two of us were ruined by it.

Hypothyroidism and depression. I feel as if I've lived a half life and spent most of it asleep. I always wear make up and trendy clothes when I do go out, so people assume I'm just lazy and unsociable.

Am really saddened by the awful conditions mentioned above. Would love to see some great medical breakthrough happen that will wipe out all of the above conditions. They say where there's life there's hope. Lots of love to you all.

Frozen shoulder. Honestly until I had it I just thought someone’s shoulder was a bit stiff. But suddenly not being able to wipe your bum or brush your hair with your dominant hand….struggling to get dressed. Electric shock shooting pains if you stretch or slightly knock it which make you scream.

o and I’ve started with the hot flushes too. Just thought you felt a bit hot….but the heat coming from inside your body not outside is a different sort of heat and I don’t like it! Surprised me how bad it was.

It's really nowhere near as bad as many of the things people are talking about here, but lichen sclerosus is worse than I realised it would be, can really change your sex life, and for some women is debilitating. It sucks.

I think living with any long term condition is shit for the person and those supporting them. It’s only when you stop to think you realise how much it impacts your life.

DS has a lot of disgnosises and one of those is asthma which he has had since he was 8 weeks old. In his case although it’s settled now with treatment for the first 6 years of life it meant monthly hospital admissions and lots of tests and treatments. Even now at 16 with a good treatment plan for him it still impacts everything even a beach walk this week was a no go for him.

I'm so sorry . My son has this but did get diagnosed early and a specialist made up a cream with directions to a compounding chemist. His psoriasis was more than half way down his forehead when he was about 6yo. I'm sure you have tried everything just wanted to say that until we saw a specialist ( it took months to get an appt) we were stuffed. That cream was amazing. I hope you can find a cure.

Endometriosis and PCOS. The pain is horrendous and the heavy flooding with clots can last for months without a break. There's been many a time when despite wearing multiple maxi incontinence pads, I've felt blood running down my leg or a clot has escaped from my underwear and is somewhere in my trousers. Soft furnishings get ruined with the flooding, as do clothes. Navigating going out can be a nightmare. Most days, I've not long got out of the bath or shower that I need to get back in again. If I do use a public toilet, by time I've cleaned my nether regions, cleaned the seat of blood and changed my pads and tampon, I'm exhausted. Oh, and the anaemia. The worst part is gynaecologists not acting in the best interests of the patient.

Trigeminal neuralgia. The pain is so bad that it's associated with higher rates of suicide.

Being very ill is incredibly isolating because unless your friends and family have experienced the same thing, they just don’t get it.

I used to fill out PIP forms for a living so i got to hear in detail about how a lot of different conditions effect people day to day.

The one I really wouldnt like is sickle cell aneamia. Theres something particularly terrifying about the idea that you can feel absolutely fine one minute and then suddenly be on the brink of death. And you never know when it might happen.

The other one that stuck with me was something called DRESS syndrome. Which is a sudden systemic organ failure brought on by an allergy to medication. Again, I think its the sense that you would not know anything was wrong and then suddenly become seriously ill that bothers me.

@LittleRobins I was a dental nurse when I was young and worked in both regular surgeries and a specialist maxillofacial facial unit that dealt with complex cases and did full general anaesthetics and sedative techniques.

One of the first dental surgeons I met in the specialist unit said almost all cases of bruxism were middle aged women and really it was often caused by mental health issues such as anxiety. That as much as we could make mouth guards tackling the cause of the grinding was more important, it wasn’t always the case but was dominant. Roll on 30 years and a traumatic incident left me tooth grinding for about a year, I broke a tooth and had awful headaches and face pain.

Just wondering if this could be the explanation for your grinding. I had therapy and now my tooth grinding is a thing of the past thankfully.

No , it’s ruined my life

100% agree. Lost my mum to this within 14 months of diagnosis. Horrific disease which left her telling me daily she wanted to die.

UTI’s

I have loads of health issues, kidney problems, awaiting a knee op,over active bladder, illness onset diabetes , gallstones and horrendous bad back. Ive always ploughed through and cracked on but for some reason perimenopause completly knocked me for 6, it left me in a dark place, the lack of sleep, the joint pain, the horrendous anxiety and tingling skin. Really totally under estimated it

Endometriosis, not just “heavy, painful periods” like a lot think it is. A whole body, chronic condition that there is no cure for.

Solidarity with this. I have only recently been made aware that not everyone thinks like this, I have been dragging myself through life with this weighing heavily on me and wondering why everything is so difficult and why it looks so much easier for others.

I can’t ever enjoy anything, even the things I know I like.

Sorry what is RSD? Don't worry googled

Thank you for sharing this.
Sometimes being t1 diabetic feels very lonely and im constantly feeling that other diabetics have it all sorted and im the only one who feels like this 😔

Definitely psoriasis on my palms. And when I was pregnant I had Raynauds of the Nipple - I literally would have swapped that for ANYTHING - the pain was unbearable and it wasn't even really recognised at the time so no treatment.

Inner ear damage causing daily debilitating symptoms like vertigo, nausea, light headedness. 20 years now and has made my world very small.

Same, it’s not just being a bit quirky and hyperactive. I have had constant suicidal ideation since I was a small child and all the other bullshit people don’t realise comes with Audhd . If I ever try and talk about it people shut me down and say there’s nothing wrong with me because I’ve put so much effort into masking my whole life .

Glioblastoma brain tumours. Very aggressive, I unfortunately know of 2 people who died in 8 weeks from the first symptom.