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?

ME/CFS - no cure for it. You feel completely exhausted all the time. It steals your enjoyment of life because all you can do is struggle through every day with very little hope for getting better. It’s said that people who suffer it have the worst quality of life. In addition to that, most doctors either don’t understand it or don’t believe it exists. There’s virtually no research money going into it. Women suffer from it more of course.

Autism isn't a superpower.

I had really bad eczema. Had to change into PJs whenever at home. Steroids and no sleep. Now fortunate to be on injectable biologic drugs

Diabetes. Most HCP say living with HIV is less risky than living with diabetes

MS I’ls no fun, and I’m usually fairly well with it. But relapsing after 10 years as the treatment I had wore off, has been a kick in the teeth.

Although in my professional experience as a nurse I would say that Crohn’s disease is one of the absolute worst diagnosis you can get.

Type one diabetes, not me my toddler. Had rocketing high blood glucose levels for no apparent reason this evening, corrected then had a hypo (twice) in the early hours. Having to basically force feed them in the middle of the night is awful for everyone involved. When they are unwell is an absolute challenge to manage (and my toddler gets really unwell with colds frequently).
Desperate to keep his blood glucose in range so he has less chance of the bad side effects when he is older but feel like we are failing him just now.

Presumably you sleep every night with a bespoke rubber guard that the dentist made you?

Hot flushes!! I am 52 and only just started getting them it’s awful, and I never realise how much older women suffer

I have this and use a facial led massager to relieve tension. I've lost teeth to it and ended up in A and E it's awful 😞 but my massager plus the guard plus the tongue exercises has really helped.

I think everyone suffering will probably think their own condition worse than anyone else’s 🤣. For me I have hip labral tears. Can barely stand or sit. Sleeping is painful. Can’t really exercise. It’s ruined my life. But then I think pain anywhere will.

Lymes disease - some people recover quickly, but others have ‘long Lyme disease’ . I have a friend who has developed a ME type response from it, and has been of work for a year.

Cluster headaches.

not many people have heard of them and I don’t think people realise how painful they are.

hereditary spastic paraplegia. Suddenly got a lot of media attention after the young Welsh woman misdiagnosed. Muscle weakness, spasticity, spasms constantly. But the real head fuck is that one minute you can walk and the next you cannot. I think people are very misunderstanding of what an ambulant wheelchair user actually experiences day to day.

ADHD and the RSD aspect of it. ADHD permeates every aspect of my life and ruins so much. Work, friendships etc. RSD means I ruminate on pretty much every interaction I have, I assume everyone thinks the worse of me, I feel like I have to explain and justify everything I do and say. I can’t take praise or compliments because I think people are just saying it to make me feel better, not because they mean it. It’s a really horrible way to live.

Pelvic organ prolapse.

All advice on managing it contradicts each other. It’s a constant nagging feeling. It’s taboo to talk about. You look fine and the adaptions needed to live with it don’t look logical to anyone else.

Ditto.
I thought i'd be able to take supplements, do yoga, have a healthy diet and just power through it. About 3 years in i was in a really dark place - 'hot flushes' made me want to rip my skin off, i barely slept and was very depressed. My GP suggested HRT and within a couple of months i was back to 'me'. One of my older female relatives had an apparently unexplained breakdown at around 50 (before i was born) and i wonder if menopause was behind it.

MND/ALS. Obviously everyone knows it’s bad but the reality is truly horrifying. And then you see news articles about it that say it “can be fatal” and “treatments are limited”. No, it’s always fatal and it can’t be cured or even dramatically slowed or reduced. And nobody knows what causes it. It’s terrifying

I do, yes. I chew through them regularly!

Yes cluster headaches- far more painful than giving birth. Also dementia when you are living with it in the family

Those injections are life changing aren’t they … my DD is on Dupilumab.

POTS. It's not just your heart rate going 'a bit high' when you stand up.

Migraine. It's not 'just a headache'.

Agre with @Booooooooom re ME/CFS too.

My lovely GP tells me she feels there would be more/better treatments if these affected more men than women but of course they don't so there isn't.

SPD/PGP - has this in pregnancy and all but ended up in a wheelchair each time.

@LittleRobinsthank you for this thread though, I got told by my dentist that I was clenching my jaw (true - I wake up with it clenched shut a lot) and do not wear my mouth guard nor did I take them particularly seriously… Had no idea how bad it could get. Really hope you find some relief soon!

Another one for type one diabetes, everything you do has to be thought about, people just think you count carbs and have the odd injection. On average we’re making a type one diabetes related decision every 4-5 minutes, decisions that if we’re wrong could kill us, or leave us with permanent damage.

I have to centre type one diabetes around everything, food, work, sleep, hobbies, having sex, when I’m unwell with other things, cold days, hot days, driving. Every night you go to bed an wonder how many times you’ll have to wake up due to it, rather than before tech having to set an alarm to make sure you would wake up every morning.

Narcolepsy. It’s not a funny condition. It’s absolutely life destroying.
Imagine staying awake for 48-72 hours and then trying to function. That’s what living with narcolepsy is like.

Dementia is underplayed, to put it tactfully, by HCP cos they want to dump the sufferer on the family.

It’s like looking after a toddler, a schizophrenic, a very frail old lady and someone with severe LD rolled into one leaky, uncontrollable, very large body.