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 watched a friend (early 40s, with a toddler) die of MND over 12 months. It is absolutely the worst thing in the world. An absolute bastard of an illness. No cure, no treatment, no hope.

Bipolar disorder. It's not fun, and I am not funny like Stephen Fry. Nor am I creative like Van Gogh. The medication choices are terrible (antipsychotics make you fat, sleepy and cause cardiovascular disease, lithium harms kidneys and thyroid). It's a world of depression and anxiety most of the time, and when you do find motivation to do things there's the worry it's the onset of hypomania or mania. Holding down a job is such hard work, as is raising my daughter, although she is amazing.

I think one of the things with MS is that it's so variable in how it affects people. My mum had the progressive kind and lost friends who just couldn't understand how badly it affected her, often because they "know someone with MS and they can manage". But maybe they are seeing them on their good days, or it affects them differently, if you know one person with MS you know one person with MS.

I’m really sorry you’re living with this awful condition I had it myself as a teenager, but somehow managed to scrabble my way out of the worst of it, but I have residual traits that hugely affect my life and it does tend to morph into new obsessions, as I’m sure you know. My son is on a huge dose of Fluoxetine and, while it has calmed his anxiety a little, it hasn’t helped with the rituals. He’s on his fifth therapist. It’s a tricky thing to treat.

Gallstone attacks are not just stomach ache that will pass after a bit of paracetamol and some breathing.

My sister and I both have asthma. She's of the opinion that you'll be ok if you stop thinking about it

Absolutely bizarre

I've just had a coughing fit washing my hands because I'm in a hotel whose hand wash has a strong smell. A shame as it's a lovely smell

I was coming on to say narcolepsy as well.

People find DD’s cataplexy amusing (and I do firmly believe you have to find humour where you can but it’s just not funny) and don’t seem to grasp how soul destroying she finds it.

Proper full-on hay fever attacks. Many people think it is just a few sneezes and a bit of a sniffle; and easily cured by a magic pill or nasal spray. Apparently you are making a fuss about nothing.

Thankfully I don't get bad attacks any more., but when I was younger they were absolute hell sometimes.

It is a bit fucking grim and pretty toxic but I can cope with it OK, better than gout! It usually works its magic for me
in about a day and a half. Have you tried prednisolone (I think the alternative to colchicine is)

I know exactly what you mean, I have EDS, and it’s one of those invisible conditions that people just don’t grasp. I’ve been accused of being lazy and attention seeking, gaslit by Drs & the DWP, and dismissed as just ‘aches & pains’. For some reason fibromyalgia is instantly recognised as a real condition, it has all the same symptoms and issues as EDS, without the dislocations/subluxations, so much so that EDS is often misdiagnosed as fibro, because even Drs ‘believe in’ fibro but think EDS is some kind of mythical condition. I feel for your friend, I’ve had similar happen to me.

Frozen shoulder (both in my case) didnt sleep more than a couple of hours for six months .Couldn't dress myself and even had to resort to cutting my bra off on one occasion,shopping was impossible,washing or blowdrying my hair was also a big no. Every time I moved I got a 10/10 pain running down my arms - I was so relieved when I got past the freezing stage and into the frozen stage as although I'd lost 90% of the movement at least the acute pain had stopped .Had surgery 4 weeks ago so thankfully I'm on the way to recovery but it was a year of hell partly because noone could understand how bad and disabling it really due to looking 'normal'.Wouldn't wish it on my worst enemy.

I've type 2 diabetes, a brain aneurysm and sleep apnea.
The exhaustion is over whelming.
I could sleep 23 hours a day and still be fatigued
People don't realise how draining it is.
I've a thing on later,so I've slept in so I can fo.
I'll come back and go to bed.

I was just coming on to say diabetes! I'm 36 and have had a genetic form of diabtes since I was 14. Outwardly I look really healthy to anyone else. But I have so many niggly complications because of it. Even the best most controlled diabetic will evebtually get complications as they age its that kind of illness!

Bipolar disorder. The stigmatising perception of either being mad & dangerous, or sexy and kooky. Neither of which are true.
Reality: life-destroying condition which has got progressively worse from ‘just’ some very serious suicide attempts age 20, to full-blown psychotic mania in your 40’s, leading to total loss of judgement, uncharacteristic behaviour, hypersexuality and then being raped, abused & degraded. This despite taking 7 heavy duty psychotropic medications nightly (49 tablets a week). Then the sudden crash into 6months of total inability to care for myself. Housebound. Bed bound. Dehydrating myself through lack of ability to problem-solve my thirst, until my kidneys are injured. Living in squalor. Developing infections and losing all leg strength. Gaining 3 stone, losing all sporting hobbies. Unable to work in my senior healthcare job which I did 3 degrees for. Unable to work anywhere or hold an conversation. Isolated from all friends and family. Not seeing anyone for weeks… and then the will-writing and getting affairs in order. The fine details of the final plan (the location, means, time). The goodbye letters to the kids written.
Bipolar has been no joke for me. 😔

Epilepsy people assume epileptic seizures are when their convulsing on the floor and frothing at the mouth. That's not always the case. My adult son does have them like that. But my adult daughter has atonic drop seizures and usually in clusters. We often have to leave a day out early because I've had to give rescue meds or she's been injured. It's not always possible to stop her from falling. She goes like a dead weight the only way to describe it is it's like seeing someone drop down dead. But do wish some people would mind their own business when they insist she needs an ambulance. That's not always the case.

I have found the work of Scott Eliers to make a lot of sense re depression.

Basically everything people think they understand about narcolepsy is wrong. It’s so much more than sleeping.
Fortunately my cataplexy isn’t too severe, but it has robbed me of doing some of the things I love the most.

When I am so soul-destroyingly sleepy and can barely function, I get sick of people saying “oh yes, I get tired too”.
I’d do anything to have an actual sleep/wake switch and not be constantly teetering between the two.

Sending a hug to your DD xx

I had something like that. I ignored it for a while but it gradually got worse. I couldn't even lift my arm. Any slight knock the pain shot up my arm. Went to the Dr's he said it was a pinched nerve in my neck. I wasn't so sure but had physio and that did the trick.

Are there not many more posibilities nowdays?
They seem to be developing new medicine for MS, only know because my colleague has it and seems very upbeat about it, also new discoveries.
I was actually surprised, but sorry about that if that's your experience.

Don’t have it any more but I had pleurisy a couple of years ago and when I didn’t know what it was and I felt the pain I was absolutely terrified. Straight up assumed I was dying. Then when my dr said “pleurisy” I thought she said leprosy and freaked out for second. I was 19 so maybe a bit dramatic but I remember when it first started being genuinely terrified.

Be careful of an infection creeping up.

Crohn’s disease. I was diagnosed at 15, nearly 31 now. Not a nice thing to be diagnosed with at any age but as a teenager, being diagnosed with a condition that increases the likelihood of having accidents if you can’t get to a toilet in time is less than ideal and I had a lot of shame over it when I was younger. I’ve been what’s considered a mild/moderate flare for well over a year and on my 4th medication in 12 months to no avail. I’m lucky in the sense I’ve never needed surgery and I’ve only had a few very bad flares over the years. But people think it’s “just IBS” and don’t understand the impact it has on your body overall. Even for someone like me who has been quite “lucky” with it, the impact it has on my overall wellbeing at times is significant. Plus, it significantly increases the risk of bowel cancer and many of the drugs to treat it increases the risk of other types of cancer so that’s a fun added bonus.

Also being autistic can be really shit but for me personally I do think there’s some up sides. I would never call it a super power but now I have the money to buy adjustments and live my life in a way that works for me (self employed, doing something that’s basically a special interest) it is fine. Being poor and autistic fucking sucks, it genuinely is something that gets easier the more money you have. We suspect DS is autistic and he is in the process of getting diagnosed (also much easier with money) and I am so glad he won’t have to struggle like I did.

think part of the reason I didn’t catch his autism earlier was the absence of meltdowns. He has them, but they’re not like mine were when I was a kid. I would smash my head against the wall and bite my arm and my parents (who didn’t really know what to do) would have to restrain me. My mum and dad were very afraid I had schizophrenia or something like that.

We lost our 4 year old niece to one, it was horrifying and she was gone within 4 months and spent most of those four months in a vegetative state.

Yes it is hard. I find ignoring all the 'advice' works best for me. I've a failed posterior repair and Uterine and anterior prolapses too.

I just sort of crack on. I'll be damned if I'm going to be told not to lift weights when I've already given up running, and when I walk I often wet myself!

I'll add plantar fascitis - or anything else that causes low level constant pain. I used to think 'how bad can it be' but now I've seen what it's done to the inside of my heel in an MRI I'm more respectful of my foot and other people's pain with it.