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?

Yep ive had it for 20 years. I have tried everything, im one of UKs worst cases og psoriasis unfortunately. I get 1 to 2 years on a biologic injection before my body starts to reject the medication and my psoriasis will intensity for a few years till they can find another medication. The next medication they will need to give me is one of the newest medications so if this one fails I dont know where to go. Ive tried most of them.

Im part of 3 clinical trials/ studied at the moment in various forms so im hoping they come up with some answers.

Hypermobility.

It isn’t just about being super bendy! I am in constant pain and sometimes can’t sleep because it’s so bad.

Anal fissures. Sitting is painful, going to the toilet is agony and lingers for an hour or so, passing wind is painful, eating means you know you'll be in pain when it comes out the other end.

Agree about ME/CFS. It takes everything away from you, and leaves you unable to fight for care or even argue with the numerous fools who minimise it and think it is some kind of neurotic response. With severe cases, life truly isn't worth living.

This is a very sad thread.

Arthritis, it's in my thumbs and until you discover the simplest of tasks that are just so painful to do, you realise how much your thumbs do and how horrible it is when they don't work properly.

I know it will get worse, my fingers are getting more swollen and I currently have injections in my thumb to help with the pain and movement but as I live alone, it's a bit worrying that everyday life will get harder as I get older.

Saying that, some of the problems already listed by posters make me realise that in the grand scheme of things, I don't have anything life threatening or so serious I would need major surgery/ongoing medication for, I still count myself lucky if arthritis is the worst medical problem I get for the rest of my life.

Alcoholism - it is so painful and secretive

PCOS. Hashimoto’s thyroiditis. Depression.
all completely zap your energy.

My mum used to care for a man with MND and he lived for several years with it. She said one of the worst things was that he had a DD who he'd never see grow up. She was a teenager when he died

Migraine. Post head injury, I developed vertigo. Both together is just horrible

Anorexia. Unending hellscape.

Undergoing tests for something systematic going on with my joints, absolutely brutal with a 1 year old and 5 year old and the fatigue that comes with it is next level. My hands already look different and dont move properly and im a way off a diagnosis. Dread to think what the damage all over will be before its under control!

IBS. I actually have coeliacs but for years was told it was IBS. Got to the point I couldn't leave the house for the symptoms. Thankfully after 3yrs and a 2nd opinion they ran a panel blood test quickly followed by camera and diagnosis. As long as I stay GF I have no issues. The thought that people can have similar symptoms but no proper 'cure' I think is terrifying!

Yep diabetes. Nurse. Horrible stats for cardiovascular disease, heart failure, renal failure, dementia.

Migraine. I think most people think a severe headache then a lie down in a dark room sorts it out. I get hemiplegic migraine mixed with vestibular migraine. So I’m in a constant state of vestibular migraine atm, this means (for me) a constant feeling of unbalance and spells of quite severe vertigo. No head pain at all.
when I have a hemiplegic migraine (about once a month ish) I’m paralysed down one side and I lose my speech. These can last up to a week.

Type 1 diabetes.

Without insulin my child would die. Thats it, bottom line. It’s fucking terrifying.

It’s a constant worry. Is today a pump or CGM change day. Have they gone to school with enough hypo treatment. Are they managing at school? Do they hear their hypo alarms? What about other children hearing their alarms and drawing attention to themselves (they hate that).

Having to get up all night to force Lyft juice into them for yet another hypo. Alarms going off all night and I have to go into work with no or little sleep. Why won’t my child wake, are they just tired or unconscious. Or glucose levels are high, do I need to check ketones or just give a correction. Fuck, another sensor failed, now we have to change it again, ring Dexcom for a replacement and more ruined sore skin. Shit, they’ve got a vomiting bug, will they go into DKA?? Oh today is hot, their glucose levels will be high for no reason.

How do I get school to make reasonable adjustments for exams?

How many carbs for this meal? Have I calculated it correctly? Why are their glucose levels always so high in the evening? Trying not to insulin stack. Do they need to be in ‘active mode’ for PE? Shit they’re saying ‘low’ is that real or do we need to check with a fingerprick.

Have I got enough insulin? What about needles? How do we go on holiday with all this equipment? How do we get though the airport without being scanned? Why have the pharmacy ‘reviewed’ the medication yet again. What do I need to contact the diabetic team about? Will they lose their eyesight when they’re older? Or their feet? I can’t think about it. What about when they’re a teenage and go through puberty? Will the pump cope? What about when they’re go through the teenage rebellion phase, or start drinking? How will anyone know they’re Type 1 if they get in an accident?

It’s exhausting, constant thinking. I am trying to keep my child alive, every minute of every day. And I worry about when I’m not around anymore.

And please stop mixing it up with Type 2, for the love of God.

All the best to you. I completely understand what you mean, because others can relate to the feelings at a surface level, they assume they know how it feels for us and just brush it off.

I have found this podcast validating and also incredibly helpful to get those close to me to understand more what it’s actually like for me:

open.spotify.com/show/371UdLohffgSlWAEuQ55Hi

Acne.

Any type of nerve pain is horrific.
I had a prolasped L4/L5 pressing on a nerve for 6 months until i had emergency surgery and honestly it almost left me sucidal, and i dont say that lightly. I have been pain free now for about 3 year however even the memories of it haunt me.

Asthma. I know of people who have been in ITU and have died from it and still people run out of their inhalers.

OCD. My 14 yo has had it most of his life and it’s so debilitating. I had to give up work and home educate him as he couldn’t go to school. He’s also autistic with pda, so can’t consider therapy. It affects every single aspect of life, and I can’t see a way out of it.

I have panic disorder and my physical symptoms are crippling. I shake so much that appointments like a haircut, the optician and the dentist are an ordeal for me. I’ve had a hairdresser leave midway through a cut because she kept asking me to stay still and I couldn’t. Most people think I’m doing it on purpose and ask me to stop but I have no control over my symptoms. I also have panic attacks where I suffer derealisation. I can have them anywhere, any time, but supermarkets are my worst trigger. It makes me feel so alienated.

Sorry I haven’t read the whole thread so not sure if this has been mentioned already, but Botox in the jaw is an absolute game changer - it has changed my life.
Its not cheap and it has to be done by someone qualified (my Botox lady is also a registered doctor), but my god, it is absolutely fantastic.

Ehlers danlos syndrome. Along with many comorbidities like POTS and MCAS which are awful in themselves, it affects all the connective tissue in your body. Which is pretty much everything. Think bowels, bladder, veins don’t pump properly as too stretchy, skin hangs from bones, prolapses from pregnancy. Pain.

How will anyone know they’re Type 1 if they get in an accident?

Have they not got a MedicAlert bracelet @Execrgybjkkbgdsxhutdc ? I’ve had one since diagnosis. I also have a red warning card in my wallet. A recent great thing I’ve added to my bag is a Hypo Wallet. It’s a small red hard-shelled case containing a Lift Gluco Shot, Lift tablets and glucose gels. It looks like it is - an emergency medical kit - so would be obvious to any bystander.

But yes, Type 1 is utter crap. Never a day off and so very exhausting mentally and emotionally. Trying to deal with it plus children plus work plus life admin is so, so tiring.

MND is awful though, as is dementia. With dementia, it’s so awful to see it destroy the wonderful person you knew 😢 😢 😢 I didn’t realise how bad it was until someone very dear to me got it.

I wish we could all be healthy and stay healthy. Much love to anyone suffering, whatever illness or condition they have.

Rheumatoid Arthritis. When you get a bad flare, it’s like having your joints smashed with a hammer. Add to this some of the drugs you take/are infused with, it’s not the best.

I have Trigeminal Neuralgia too, thats a bastard.

My life is an abbreviation, RA and TA. 😁

@ButterflySkies have you had the full blood panel tests for auto immune diseases?

Sorry, probably a daft question but joint pain/swelling can be a part of a few AI conditions, including Sjogren's Syndrome, & as you are obviously aware are difficult to diagnose.