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?

Grief. Often it's intense for a little while, then mild and manageable, but sometimes it can be crippling and sap any enthusiasm for going on.

Skin diseases.. Specifically Hidradenitis Suppurativa and Folliculitis. So, so, so utterly miserable.

My daughter has OCD. Before it developed, I could never have imagined the level of distress it can cause. She's terrified of everything around her. Sometimes she'll stand for 20 hours straight because she's convinced the only chair she'll sit in is contaminated. She only sleeps for 3 hours a night because her compulsions take so long. She's tormented. I've known plenty of people with mental health problems but I've never seen anyone as visibly anxious as she is.

It came on in the space of a month, and completely ruined her life.

I always think asthma is one of those conditions - just seen as standard sort of thing, not really remarkable, but literally life and death if an attack gets out of control.

Stills disease. It's auto inflammatory or auto immune depending on who you talk to. Your first flare is generally the worst and can take ages to diagnose what it is. Then once your recover you are taking a concoction of drugs to keep your body in check and hope it doesn't flare again. I have acute apparently not chronic which means I'm always awaiting the next flare. I'm fairly well most of the time but last November I had a massive flare which due to other issues took a long long time to get under control. I'm now in recovery from it and definitely getting more mobile every day. This last flare affected not just my ankles, wrists etc but also my eyes and possibly some other organs but bloods were so inconsistent it's hard to be sure. In recovery the epic tiredness having not slept due to steroids for months is my current challenge. A few more weeks and I'll be okay ready for the next flare....

I think with diabetes people think you just inject insulin and live as normal , I had a friend whose diabetes ruined her kidneys and caused lots of other damage . She had to have a kidney and pancreas transplant and before that a bypass . People just don't realise how awful it can be .

Not sure if you’ve tried it But hypnotherapy can really help with this

Another one for Autism, there really should be different classifications, there is a huge difference between a working adult with a degree and someone who is unable to live independently yet they both can come under the same diagnosis

Ive had tinnitus for years. I was asked about it by my hearing therapist. (I have other hearing issues) I thought everyone had ringing in their ears

I was given wearable white noise generators but found the tinnitus just got worse if I stopped wearing them

I waa 41 when I developed frozen shoulder, absolutely excruciating.

HRT has been the only thing that helped.
Did physio, pain killers, acupuncture and massage but as I was 41 no one mentioned its a menopause symptom.

I was investigated for this recently too. My symptoms are really difficult - can't swallow properly, food gets stuck so I feel like I might choke, retching and coughing when I eat, chest pain at night, drooling in my sleep, constant gurgling and burping. All very embarrassing and sometimes scary. My appetite is very low and I'm struggling to maintain a healthy weight. Eating out is particularly tricky, I'm sure some people must assume I have an ED when I eat at snails pace and send back nearly full plates of food. It looks like what I have is Achalasia rather than EOE, but not confirmed either way as yet. The guy who did my barium swallow said Achalasia and then flippantly told me 'it's not dangerous, just annoying'. I wasn't best pleased. My quality of life is significantly affected by it, and obviously it could have repercussions for my general health if I can't eat well. Plus it can't really be cured, though treatments can help with some symptoms. I'm going to be managing this for the rest of my life.

Hidradenitis suppurativa, a hugely painful skin condition that causes boils in places you really wouldn’t like them.
mine are in my armpits so when I get a bad flare up normal life grinds to a halt.

It’s like a wound that never heals. if I’m lucky it might go into remission for a few months and comes back with vengeance.
there is no cure, nor really any management. I’m just a slave to a flare up.
which will mean, for me, getting dressed will be tortuous, sleep will be nigh on impossible and my family have to see me in such pain knowing there’s nothing they can do about it.
I have to live with the guilt about what this means to them.
if I’m lucky I can go four months without a massive flare up.
Doctors have no cure, only able to prescribe antibiotics and serious pain killers when it’s bad, and hope it doesn’t lead to a hospital admission for drainage under a general anaesthetic.
it’s not something I feel comfortable taking about with people so tend to isolate myself, especially when it burst and I have to manage drainage and often a nasty smell (although my kids and DH says that I’m more conscious of this than anyone else).
its hard. Its affected my life for the past 35 years.
it makes me feel weak and like I should handle the pain better. But honestly it’s unreal. The slightest movement sends pain through my whole body.
im in my mid fifties and sometimes cry when im getting dressed.

Plantar Fasciitis. Its such a stupid, niggly, minor health problem and it is such a PITA when you have it!

There are more than 2 types of diabetes

Yes it's surprising how few people are aware of this

I’m sorry you are feeling like this, but if people are paying you a compliment to make you feel better can you see this as a positive thing?
Surely it means they care about you enough to want to help you feel even a teeny tiny bit better about yourself.

I have myotonic muscular dystrophy. It's progressive and incurable. I don't work anymore but when I did i had a manager who would always try to downplay it and make out it was not serious. It really upset me on a number of occasions. But people only look at what i can do, I can still walk albeit slowly with aids (stick and walker). I do what i can but it can change overnight. They don't see my struggles at home, weakness in my hands, poor balance and the pain, oh the pain.

That sounds really scary and horrible
My Myasthenia Gravis means that if I do too much physical activity or talk to much I lose the ability to see/speak /swallow and it is losing the ability to swallow safely which I hate the most. That's the one that forces me to rest sensibly.

i have many complex, chronic illnesses which i can give some points about:

HSAS1- (Hydrocephalus plus a blockage in neck) leaving me with fatigue, joint pain, memory issues, muscle tightness/floppiness and hypermobility

two brain injuries- meaning i have little emotional filter
visual impairment- i have very little spatial awareness
Epilepsy- controlled so not the most awful but makes me tired
Non epileptic seizures- another draining issue
Anxiety- i constantly overthink
Asthma- get out of breath if i dare exercise
Depression- can be awful
Autism- together with the brain injuries, impact processing and emotions more
hearing impairment- difficult to process noise in busy places.
speaking impairment- means im not well understood sometimes.

they all contradict with each other, and it makes like a bastard, but i just get along. anyone else in same boat with this combination?

I have a rare illness HHT and in no way as serious as some of what people have described. My frustration is with with some doctors and health professionals. I have nosebleeds some short 15 minutes but others much more serious

it is stressful and frustrating not knowing when you will bleed (the most inconvenient time)

The public are generally brilliant but (some) nurses, triage and docs will just treat like a bang on the nose and not serious. I won’t be asking for help until I have bled for about 45 minutes of heavy bleeding. I don’t expect them to know it. Then you get someone that’s heard of it or hasn’t but listens and even just google. I can’t really explain much with level of bleed.

I don't think anyone fully understands what a condition is like unless they've experienced it themselves. Or maybe caring for someone with it.

I'd say acute psychosis leading to life threatening behaviour is one that I didn't believe until I saw.

Like I couldn't comprehend how someone could endanger themselves so badly while not having any control over what they were doing. How their personality could suddenly switch.

Almost like I thought they must be doing it on purpose to an extent? That sounds awful but yeah I had to witness it to see the horrific severity of it.

Pmdd

Quarter of your life wasted and ruined.

Absolutely ADHD and autism - thanks all those super power tik tok vids. I have both and the interact in various ways / some helpful some not so ADHD medication is not likely to be that helpful. Re the RSD - I have just read “Why does everyone hate me?” Really excellent book.

Time doesn’t exist for me either, I can tell you logically that my Dad died several years ago and my mum died a few months ago but because it is the event )in this case dying) that matters I have no feeling of who died longer ago. I never get people cards or presents on time because I have now and not now. Peoples birthdays and Christmas’s are always in the future until they are now when it’s too late. Life is a constant stress of last minute rushes, physically unable to do anything until it’s the last minute.

emotional disregulation is terrible and adds to the distress and Shame of RSD.

Spending your life navigating a world that is upside down and backward and far too loud. The constant exhaustion in navigating a world that makes no sense. Constantly playing a character and behaving in bizarre unnatural ways to seem normal to try and fit in but never quite getting there.

Sitting still in a meeting for an hour which you concluded in your mind in 5min when you just want to stick out your arms and spin or dance and sing.

Fibromyalgia. It’s life changing. I don’t know how to describe the all-over pain except overwhelming. I also have Arthritis & Sciatica, but it’s the Fibromyalgia pain that reduces me to tears; it’s just everywhere. Then there’s the fatigue. When a flare-up is at its worst, I get out of bed only to go to the loo, and spend much of the day sleeping. If I’m forced to go out during a flare-up I need my wheelchair.

My life now feels very small. I can’t work any more and I’m housebound most of the time. I hate it.

Hidradenitis Suppurativa looks awful.

The DD of a friend of mine has just been diagnosed with Lichen Planus. Her skin is covered in brown Dalmatian splodges, including her face. It is just heartbreaking as she is only 29 and she should be enjoying the best years of her life. It has destroyed her confidence and she rarely leaves the house now unless totally covered up and with her face covered in thick foundation.

Nobody knows what causes it as they think it is an 'autoimmune' issue or how long it will last. She was prescribed steroids and they make her feel really ill.