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?

Bowel disease.

I thought it might just be a dodgy tummy here and there, issues with constipation.

Never realised that if you were to get chrohns or colitis, you would have it for life and its worse than what I just assumed/thought.

Oh lo and behold, my toddler started having it 3 years ago, it was awful and now shes on meds and injections for life, pain and diarrhoea everyday all day 😢 cant attend school due to it and so im home schooling but I love it. Her immune system is weak and shes 6 in 6 months but wears 18m/2/3yr clothes small and frail and ends up in hospital over any thing as when she catches a bug from her siblings it leaves her in such a bad way.

I have had to have 3 teeth out that had cracked due to TMJ. My jaw frequently locks or dislocates and the headaches are awful despite having a mouth guard.

Seriously considering botox in my masseters.

@Execrgybjkkbgdsxhutdc
this is the most accurate description of type 1 I’ve ever read.
My dh has been diabetic since childhood and it’s such a horribly misunderstood and all consuming condition.
He literally never gets a break from it. Even when he’s in balance he’ll still be planning for the next meal or for leaving the house etc
The new technology is great in lots of ways but I think he misses the old days when he was solely reliant on finger prick blood tests and injecting himself multiple times a day.
He often says that at least he got a break from being diabetic in his sleep back then but now most nights are filled with various alarms going off - it’s not ideal for me either and really impacts my sleep.
I can’t imagine what it’s like having a child with type 1 op, big hugs to you.

I wonder if it's Polymyalgia Rheumatica (PMR). It comes on suddenly, can't be identified with a blood test (only a slightly raised CRP), and is self limiting (although it lasts 3-5 years).
The first signs are absolute exhaustion, and difficulty moving, unable to lift your arms above your head and a gradual decrease in mobility. It's like a frozen shoulder all over your body. It can often start with the hands.
A rheumatologist will be able to identify it but the acid test is sitting on a chair with your arms stretched out in front of you. Try to stand up. If you can then it's not PMR, if you can't it is.
It's treated with prednisolone which is like a magic pill, and symptoms disappear within hours.
Gp's have no idea it exists, and because it doesn't show up on bloodtests, it's often misdiagnosed as everything from hysteria to early onset arthritis. Keep pushing for a diagnosis

Have a look at the Changing Lives through Horses run by the BHS. Where I livery my horse runs the program, it is financed by social services. The transformation in the kids is incredible.

Horses have changed my DS’s life (struggled with OCD especially during covid), got him to stables and riding. Horses are now his career. Another livery, her DS has autism, struggled with college after school is now doing the program and again the difference is incredible - social services are financing his place.

I’ve had psoriasis for 30 years. 6 weeks ago I drastically reduced my gluten consumption (no pasta, beer etc) and I’m starting to see a real improvement (less flaking & itching and patches of normal skin within the psoriasis). It apparently takes 3 months to clear your system of gluten. But so far it seems to be making a difference.

This. I was diagnosed at 16 and am in my mid 40s now its robbed me of so much life. Unable to have a family, relationships, hobbies, travel, just do normal day to day activities. It sucks the joy out of everything. Waking up every day feeling like you have the worst flu and worrying about how you can get to the next time you can lie down.
The lack of treatment and care available is just soul destroying and there is still a huge stigma around it- I dread having to tell people.

Like @JulietteHasAGun I'd say frozen shoulder which is hideously painful at times. It's not as bad as many conditions here, not least in that it clears up eventually, but those are expected to be hell whereas when I first heard about frozen shoulder it sounded annoying but nothing like as bad as the reality.

I’m so sorry. Psoriasis is really misunderstood, both the physical and psychological symptoms. I’ve had it for almost 40 years. Worst in my teens and early 20s. UV light treatment helped at the time but I now have skin damage as a result. It’s never fully gone. My scalp is particularly bad. I hope they find something that works for you.

Have you tried botox injections on your jaw? (At the joint corner, in the muscle). I have this as my bruxism was causing migraine/tension headaches. Most dentists will do them now, but so will many aestheticians. It costs if you cannot get on the nhs, but it is pretty life changing if you are suffering?

Tinnitus - it can destroy your life and there is little research. I have an amazing audiologist which is just luck as I met some real scammers at first. Every day I rely on inner strength to maintain a quality of life. I remind myself how amazing I am to have coped with many challenges as a woman.

I'd have to say that I underestimated tonsillitis and anal fissure before I suffered them myself.

Before having them I dismissed tonsillitis as just a sore throat, and didn't realise anal fissures could make me cry every time I had to go to the toilet and take so long to heal.

I was recently investigated for eosinophilic oesophagitis. I’d never heard of it before, but treatment is basically an exclusion diet that means no dairy, gluten, eggs, soy, fish/seafood or nuts. It leaves almost nothing you can eat. Gradually you can start reintroducing foods to see which ones actually trigger you, but each time you need a gastroscopy and biopsies.

I tried the diet while awaiting biopsy results and it’s miserable. It’s so hard to find things you can eat. Free From food usually replaces one allergen with another- for example gluten free bread usually has egg in it. And of course you’re paying more for substitutes eg crème fraiche made with oats. Then gastroscopies every 6-10 weeks that may or may not mean you can eat one more food group than before.

DS1’s extremely premature birth, leading to multiple complex disabilities including non-genetic autism. I wish he could lead a normal life and every day I feel guilt for giving birth to him so early. He will never live fully independently.

More of a symptom but school refusal in children and teens, often linked to conditions like autism, OCD, ADHD, anxiety and other general mental health issues.

It’s awful as you’ve no idea when/if it’ll improve, whether they’ll ever function enough to get an education or job and you grieve the child’s potential that could have been. The medical profession are deeply divided on how to treat teen mental health in particular and there is no help - it’s all on the families to deal with.

The worry and stress for parents is out of this world.

I also agree with the dementia one from the 1st page. Families are utterly abandoned and the view from the professions seems to be to let nature take its course.

Ulcerative colitis and erythromelalgia, I've got both and the erythromelalgia is awful, it's not just hot hands and feet, it's debilitating and completely alters your life 🙃

Another vote for diabetes, both type 1 and type 2. People often underestimate this disease. I have lost so many loved ones to this due to the impact it has on organs, nerves and its contribution into other problems. To always have to plan for your every move, for every possibility. For every step you take to be excruciating agony at 40 due to nerve damage. To be told it’s possible to “cure” type 2 diabetes only to discover that no, once your organs and the nerve damage has occurred that’s obviously it. Blindness, amputations to wounds not healing, depression… people do NOT have enough respect for this disease nor do they understand how much of the food in our shops contain hidden sugars.
Once you know, you know, but often it’s too late.

I will also add that my friend lost her mum to ALS and that was horrendous to hear about.
And my SIL has the aggressive type of MS which shuts her body down bit by bit- she’s in her 50’s and it’s been a steep decline.

There are SO many horrific diseases and we all walk around taking things for granted.

Sinusitis, especially chronic sinusitis. I've had sinus issues all my life and at times it's been so debilitating, every minor cold leading to 12+ weeks of intense head and face pain that throbs with every movement, I can feel it with every step i take. I definitely find that those who've experienced it react differently when I tell them I'm suffering as they know the pain! I had sinus surgery a few years ago which seemed to help a bit but lately it's got worse again and started radiating through my teeth and jaw, like electric nerve pain in all my teeth, its awful. I dread catching a cold, not the cold itself but the aftermath, the years my son was in nursery (and all the associated bugs we caught) were brutal.

Yes defintley my son wss disgnosed aged 16 in DKA absolutly terrifying if he had gone to sleep that night he collspsed he wouldnt be here now.

My dad has this. He’s had cancer several times, including having a shunt put in his head to treat the brain, endless rounds of chemo and radio and he’s always bounced back somehow and I’ve never heard him complain or say he’s in pain but this has really affected him and he told my mum he feels like jumping out the window some days with the pain. He ducked out of the way of something the other day in the garden and it reduced him to tears where the sudden movement sent pain into his neck. I don’t suppose anyone has any recommendations for things that have helped?

My understanding of perimenopause/menopause was entirely periods/hot flushes based.

Which is how I ended up in the middle of a dog walk in the woods noticing other uses for the lead and assessing accessible but solid branches.

I wanted to be alive. But it was like being one of those zombie ants, like something had infested my head and was trying to wrestle the controls from me.

By chance I heard about the spike in suicide in middle aged women, put 2 and 2 together, and got HRT.

Left untreated I’m not confident my luck would have held any repeat attacks of what was trying to wrestle the controls from me.

So? It makes it harder to crack your teeth, but you still wreck your jaw joints trying!

They're plastic, not rubber. I use heat moulded sports guards or tooth whitening trays these days and my dentist hasn't noticed any difference except to his pocket.

Vertigo. Everyone else i know who's had it was basically just a bit dizzy for a few days. When I get an attack, I'm completely unable to function. Can't stand, can only just about crawl, vision goes as everything is swinging from side to side like I'm in some kind of twisted funhouse. Can't move my head without vomiting or eat or drink anything without it coming straight back up. Just habe to lie in bed moving as little as possible until it passes. Last time I had it I was genuinely praying for God to put me out of my misery. Off work for 2 weeks, couldnt drive or go out alone for several weeks afterwards.

Pots

This is me. But for 40 years. And rheumatoid arthritis. And fibromyalgia. At times I wonder why I bother getting up!