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?

Would you be able to explain more about this? My partner has it and I want to help as much as I can.

My child has dystonia, gastroparesis and epilepsy and will likely not make teenaged years. His digestive system is slowly failing him, it's incredibly painful and he can't digest the nutrition he needs meaning he can't properly absorb the medications he needs to control pain, spasms and seizures either.

Trigeminal Neuralgia. I have this and it is like being knifed in the face and a current passed through the knife, hundreds of times an hour.

Did they not offer you steroid injections, my colleague has had both go, but recovered much quicker then you with steroid injections into her shoulders.

Not sure if it has been mentioned but interstitial cystitis. People hear cystitis and think a bit of pain when you wee but this condition can be unrelenting and debilitating. It used to be classed as a disability in the US (maybe still is). It can involve nerve pain and muscle spasms as well as bladder problems. I got it quite young at age 20 and had years of unrelenting pain along the pelvic nerve which goes to the clitoris, muscle spasms in my urethra and constant painful need to pee but peeing made the pain worse. I was almost housebound and very depressed, thankfully it is much better now but I still fear its return. I think more people have heard of it now because someone on Married at First Sight has it. There are still not many treatments available but I hope one day we will have a cure so one has to endure the pain I had

Yes I also have had this.

I remember telling the lady on the phone to 111 you’d put a dog down if they were suffering this badly so why do humans get brushed off as if it’s nothing!

I think the trouble with a skin condition like eczema is that everyone, especially women, knows how to "take care of their skin" so people are inclined to offer all kinds of top tips, not understanding that a dysregulated immune response is not going to be helped by whatever it is they found great for their lovely unbroken, unreactive skin.

And individual cases vary so widely that dermatologists seem to be playing a guessing game. I sat through one long and humiliating examination where the med students were called in to have a good poke around before the consultant declared that I must have an allergy to washing-up gloves, as though that explained the rest of my body. He refused to accept that I experienced no allergies when wearing gloves for washing up.

Before my brother retired, he used to use hypnotherapy for this with really good effect on his patients @LittleRobins It might be worth seeking a hypnotherapist that does this.

I had bouts of severe acne on my face only in my 20s, really painful with no solution. Ruined any confidence and all people saw were my spots.

I’m going to say gout.

Like many people I used to think it was one of those slightly comical, self-inflicted “too much port and red meat” conditions.

Until you’ve had it, you simply cannot grasp the pain. It’s not a “sore toe.” It’s a full-blown, white-hot, can’t-bear-the-weight-of-a-sheet let alone put on a sock or shoe kind of pain that takes over your entire body and brain. I’ve had a baby with no pain relief and yet gout brings me to tears.

Walking is agony. Sleeping is impossible. Even the lightest touch feels like someone’s smashing your joint with a hammer and pushing needles into it. Which is kind of what gout is as the uric acid forms into sharp crystals that attack and can permanently damage the joint. It’s actually a form of arthritis. Uncontrolled uric acid can also damage your kidneys.

What’s almost as bad is the stigma. There’s this lazy assumption that it’s brought on by lifestyle or indulgence, when for many of us it’s largely genetic - a predisposition to high uric acid levels that your body just doesn’t handle properly. You can do “all the right things” and still end up with it.

For example I had someone telling me it was caused by too much red wine. He was actually drinking red wine at the time. I don’t drink alcohol at all.

I genuinely had no idea how debilitating it was until it happened to me. It completely floors you.

Thank God for proper treatment, colchicine to get flares under control and allopurinol to actually deal with the underlying uric acid and stop it coming back. Absolute game changers.

I don’t want anyone else to suffer from it but perhaps if they could live with the pain for a short while the lazy assumptions and jokes would stop!

@GreenGodiva 👋 Fellow Sjogren's here. Ruddy disease just keeps giving, doesn't it 🙄. And not many have heard of it.

Ehlers Danlos/Hypermobility. From ‘oh yes, I get back ache too!’ to ‘you’re too young to be that tired/aching’ to my absolute favourite ‘oh I wish I had that, I’d love to look as good as you!’ (Because my defective collagen means I have far fewer wrinkles and look a lot younger than my 57 years)

People think it’s just being bendy, (double jointed is an old term that’s still used by some Drs) and that it’s no big deal, and at least I look good. It’s so much more. I’m in significant pain, all the time, my meds reduce my pain to a level that allows me to function, but I’m always in pain. Always.

My gastric transit is inefficient, meaning I have to eat very carefully or I end up with severe constipation and bloating.

My skin is fragile, as are my veins, (although I don’t have vascular EDS) so I bruise like a peach, and get grazes and cuts from nothing. Cannulas don’t stay in my veins, they tissue and leak within 12 hours, so if I need an IV for more than a day I have to have a PICC line.

I also have MCAS, which means I get allergic type responses to random things, I can break out in hives or massive red splotches with no apparent cause.

It’s impacted my eyesight, with astigmatism and issues with concentrated focusing.

The fatigue is severe, I can only work part time and have afternoon naps most days, and again, people seem to think this is some kind of luxurious dream lifestyle, but actually it’s debilitating, restrictive and incredibly frustrating. I resent losing significant chunks of my day to my need to rest.

It’s incredibly debilitating.

my dd was recently diagnosed with chronic sinusitis. Blocked and stuffy 24/7 and painful headaches with every basic cold. She’s going to have the surgery .
Did you find out the cause of yours? DD’s ENT dr said it can be tooth infection despite not having any kind of tooth symptom. Once the nerve dies no feeling. And at the beginning the swelling breaks through to sinus cavity so doesn’t trigger tooth nerves. He said if tooth infection isn’t treated the chronic sinusitis can come back.

Dyslexia. It's not just struggling to read its not a "lesser nero divergent" to be disnmised as if you are discussing the more important ones.

It's with you every day, every time you do anything as it has to do with how you process things in your brain.

I have RRMS - it can really get you down when a flare up hits. How are you doing now?

Centralised pain syndrome. Also no cure and meds don't touch it as its neurological.

Completely agree - it is a terrible pain. Unless you suffer from it you just cannot imagine how much it hurts! Could I ask if you have much reaction to the colchicine? I have a very sensitive stomach and cannot tolerate it.

Not sure if it’s been mentioned, but OCD. If only it was just about lining up your pencils and keeping the surfaces clean. My 13yo has had it for 3 years and his life has shrunk to the size of his bedroom. It is an absolute living nightmare, not just for him, but for everyone in our family. So, to the people who say ‘I’m a bit OCD about that’, fuck you.

Sorry, it’s very hard not to get angry.

I agree. This is me, diagnosed 30+ years ago. But also have ME and Bruxism. I don’t think most people understand how any one of those actually affects someone. Each day is just a battle to make through sadly. No matter how hard I try.

OCD. It is so much more deblitating than people realise.

Hay-fever can be an absolute bitch! Currently having to use hydrocortisone cream on my eyes as red & swollen & now on industrial strength antihistamines. People frequently underestimate how severe it can be & the impact it has. I've developed asthma as a result of having had hay fever since age of 3 and also sinusitis. By no means is it life limiting but it does make life difficult especially at this time of year.

Osteoporosis. Yes it's an older woman thing in many cases. It can involve multiple agony inducing fractures and immobility......vastly more women than men get it - so yes, it's under researched, under funded and you're supposed to just get on with it.

But not worse than the other things people have mentioned.

Yes I have OCD and have had no support from MH teams. Tried medications and none have worked. It is really really chronic and affects my life and my families lives. Someone I work with made a couple of jokes about OCD and I could hardly deal with his ignorance.

I think mine is structural - my surgery corrected a deviated septum but in my follow up a consultant told me I also have nasal valve collapse which i could have surgery for (wish they'd told me that before!!), i really struggle to breathe enough air in through my nose! It was really hard to get the NHS to agree to my initial surgery though so not sure I have much hope of getting more...

So many difficult conditions on here.

My experience is not my illness but those of loved ones. depression (in DH) and dementia (DM, MIL). The effect on loved ones is unspeakable. My DH talks about suicide. I feel so ill equipped to deal with it, how to help him while protecting my kids and myself. He's tried therapy, medication - various types of each. It's not just the emotional side but also the practicalities. Will he spend the weekend in bed again so i have to to do everything? Will he ever be stable enough to work again? How can I earn enough to support the whole family when I'm so drained? My DM's dementia is destroying my DF and I feel like I've lost both my parents. There is some support and understanding of both conditions but it hardly touches the sides.