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 have Crohn's, it was not fun at all for the first 4 years but after that they found drugs which have put me in remission for the past 30 years. The only time it flared up was when I was pregnant and I had to be on a low dose of steroids on top of my immunosuppressants.

I do live in dread of my dd getting it too, but I did want people to know that with the right drugs and a bit of luck it can be ok!

I also have TMJ, PCOS, Tinitis, ADHD, Visual Snow, EHS and dysgraphia.

Tinitis, ADHD, Visual Snow EHS and Dysgraphia are all neurological/ neurodivergent. I was told a long time ago that Neuro things dont come alone, it always comes with something. I've had Tinnitus, and Visual snow all my life and dont know life with out it. I honestly thought for more than half my life that everyone sees static and had ringing in their ears 🙈

Of them all TMJ causes me the most pain. Its lead me to grind all my teeth flat, dislocate my jaw and I wake most days in pain.

Other people have mentioned Dementia and I concur

My mum has it and I am the sole carer. Hers is undiagnosed because she has capacity (legally) and has refused to attend a memory clinic appointment.

GP is great and tries but has told me that mum may end up being sectioned and only then will a formal diagnosis happen.

People who have encountered Dementia “get it” and people who haven’t think it’s just about forgetting things.

As an illustration we are currently at Day 17 without a shower. She doesn’t eat except for rubbish like chocolate and crisps. She can be very difficult and nasty when things aren’t going her way. She tells the same stories over and over and watches the same rubbish on TV over and over.

She’s set fire to piles of tea towels by dumping them on a lit hob. The gas hob has to be off when I go out because in the past I’ve come home after an hour to find the house full of gas and she’s oblivious.

I have been woken up at 3am because she’s in a state over Dad not being there - he died years and years ago - and I have to lie to get her back to bed knowing she won’t remember in the morning.

She has T2 diabetes and COPD neither of which are managed because she won’t and won’t listen to me. Metformin lasted one dose and she won’t take it because it makes her feel sick. I had a call from the pharmacist last month because she was getting angry because he wouldn’t sell her an inhaler. She has one but won’t use it because “it is the wrong one” and nobody can find out why it’s the wrong one.

i have no respite and no relief and I’m four years into this. I cannot tell you how much I hate this disease.

That sounds awful. I’m so sorry.
I always think that Dementia is the most cruel disease, not just for the sufferer, but the poor family dealing with it. The person they love is still there, but also isn’t. That must be heartbreaking.
Sending love x

hEDS/POTS/MCAS

In my case the hEDS has fucked with my spine enough that it's arthritic as hell and the protruding discs have caused spinal stenosis. I can no longer walk more than 3-4 steps with a zimmer frame. I'm a wheelchair user now. Oh and its ballsed with my temperature regulation to the extent that I am sat here with my heating on 23 degrees AND a heated blanket on. I'm still cold.
I liken MCAS to adhd of the immune system (or at least it is for me). Being cold is a huge MCAS trigger for me. Random allergies to weird stuff also appear totally out of the blue with MRI contrast medium being the latest one. Yeah that was fun finding that out because MCAS makes my immune system go batshit crazy. I ended up with the crash team being called because I went into full anaphylaxis totally blocking my airway. Fun fact- there is no alternative to contrast medium so the next time I have MRI (which I need every 6 months to monitor how much the hEDS is fucking up my spine) I have to have it with a lot of drugs running beforehand to counteract the inevitable reaction and a consultant anaesthetist present. And because our dear NHS is like it is, I'll ride my pet unicorn up the street before this happens any time before the second coming.

hEDS is far, far from being bendy.

My daughter has this, she looks beautiful on the outside but what happens on the inside is truly dreadful. She puts a brave face on but people don't see her suffering daily like I do. I'm sorry you have this, it's just awful to live with x

Are you making sure to always use eye drops that don't have preservatives in? I made the mistake of using some that had preservatives in for slightly dry eyes (not Sjrojens) and it made my eyes extremely dry because my eyes became sensitive to the preservatives (which is apparently common with long term use). For ages I was using more and more drops thinking they were helping, without realising they were causing the problem! I almost never need eye drops now.

I have type 1 diabetes, Crohn's Disease, migraines, anaemia and hypothyroidism. The Crohn's is the worst, it's affected every aspect of my life and I have no control over it. I'm menopausal now and everything has got so much harder to control, I feel like I'm falling apart.

Sleep apnoea. It’s terrifying suddenly waking up thinking you’re dying

@Givemeachaitealatte😢

@MujeresLibres I’m so sorry 😢

I'm going to say Dercum's disease.

I am lucky compared to some of my fellow sufferers in the sense that I only get awful pain when my lipomas are pressed, it's not constant pain.

Being covered in painful lipomas is not nice. I have some bigger ones but most are small and I have a lot of pea sized lumps in clusters. Im covered in them and they hurt like hell. The pain can be excruciating.

I have flare ups as well where fat feels more sensitive and I get a lot of stiffness- which I think is probably down to inflammation.

It impacts on a lot of things. I hate that I can't have a back massage as it would hurt too much, normal hugs etc can cause a lot of pain. Hard chairs hurt me.

A lot of other symptoms go along with it, but like I said, I am luckier than a lot of other people with the diagnosis so far.

Pure OCD

IBS has absolutely ruined the last 30 years of my life and no one takes it seriously.

And it's getting worse with age. My life has become very small due to this condition.

I don’t think it is confined to Dementia.

So many people are unpaid carers in this country and there is so little support for them.

I get UC and LCWRA and when it looked like LCWRA was going to be axed I had a massive row with my local MP. I have given up everything including a very highly paid job and have to survive from month to month on a shoestring.

I would like to see any politician care for anyone with a complex illness and live on the minuscule amount that is paid to carers.

This thread is such an eye opener.

Peripheral neuropathy. Have been dealing this for almost two years now, having been bought on by chemotherapy. It's steadily got much worse and stress exacerbates it. When I have an attack, my brain goes into meltdown and I quite literally cannot understand what people are saying to me, it's like they're talking to me in Finnish or something. Some days, my hands are so painful I cannot hold cutlery or even use a touch screen. (Earlier today, I couldn't even turn the hob on). It's absolutely a minefield to try to navigate and it's always when I think it's easing up, I have an attack. Even now as I type this, my finger tips are both numb yet experiencing searing pain, almost like electric shocks. One of my thumbs is vibrating.

Have only just realised that most around me have no idea what PN is to the degree that I have had to give them a guide of sorts explaining it to them.

Also, vertigo, another thing I have started to experience since chemotherapy. It is quite possibly one of the most horrendous things I've had to learn to live with (and makes chemo feel like a breeze).

Edited for typos 😬

I have PN, caused by B12 deficiency, not as severe as you by sounds of it but still quite grim

Not read the whole thread but cleft lip/palate. So many people said when I was pregnant with ds that it would be one quick surgery and done and more than one person could understand why the midwife couldn't just stitch it up in the delivery room like an episiotomy. Ds has had multiple 3 hour and longer operations. He has hearing loss, speech problems and multiple other issues.

Being a term baby in the nicu. My premature baby was mostly oblivious about who was caring for him but my youngest was fully aware that he had been taken from me and he was severely unimpressed. I used to do the post c-section shuffle down to see him and he would almost always be screaming and would only calm down when I held him. I would only be on my ward for food, sleep and painkillers but I would still often get phone calls from nicu saying he needed me. He's 11 now and still struggles being away from me.

Whenever I see people say this I always think to myself that it must really, really piss some people off who actually have autism. It must be so incredibly offensive to a lot of people.

Insomnia. It’s torture. I dread going to bed at night. It takes me at least an hour to get to sleep, and I’m usually awake again by one or two. Plus I have nightmares. I have two choices. Either I take a pill of some kind, in which case I feel groggy and hungover the next day, or I take nothing, in which case I toss and turn and feel sick and sluggish. I haven’t slept properly since I was in my 20s. I’d pay thousands for a pill that gave me a deep, nourishing, dreamless sleep and left me feeling bright and sharp the next morning. But there is nothing. So I just have to suffer.😓

What medication do you take?

I struggle as well and use the Calm app and aromatherapy (and magnesium and rescue remedy and CBD etc etc 🙄) but if I'm having a tougher time than usual I take a tiny dose of diazepam and it's just enough to relax me into sleep without feeling like crap the next day.

Epilepsy. It’s the same… you have to consider everything… any wrong decision could have very serious consequences. Takes years to find the right medication, if there is one that works for you, if you do, it might suddenly stop working for no reason. You may not be able to drive, work alone, work at a height more than 10ft etc etc etc. it’s horrific tbh

IBS. Doctors don't want to know, there's no help. I'm scared to go out, I won't eat if I know we need to go out. First thought when going somewhere is where are the toilets.
The pain can be severe and sudden. It rules my life. But it's " just IBS".
It's not all the time. Most of the time I'm fine. But it's the anxiety about "what if it happens when I'm out" as I don't get much warning when I'm getting an attack. It's made me so anxious.

The issue with many of the illnesses mentioned is that the majority of people only see people with these illnesses on a good day, or people don't share the full extent of what they experience. But it's completely understandable why, society judges when "you look fine to me" so people are careful who they share with. So many awful illnesses people are juggling here.

I was amazed to see someone say that they considered MS to have minimal impact to most people. Having had a close family member with progressive MS it's horrendous and wouldn't wish it on my worst enemy. And it's so variable too so anxiety inducing not knowing if/how it will progress. I just couldn't believe anyone wouldn't realise the extent to which it can present.

I do think AuDHD, anxiety and OCD are hugely misunderstood. Plus many people will also have fibro, gut issues etc, possibly due to constant feeling stressed and masking. The fact that it's often not taken very seriously or offered much support is the problem.

I was also surprised that blood clot recovery can be long, painful and you may never be fully back to "normal". Maybe it isn't that way to everyone but it can be quite debilitating

Also, anything that is long term with no distinguishable cause. The time it takes to diagnose and the lack of taking all niggles and trying to piece together and look beyond normal blood tests. Just prolonged pain with no remedy (which I do appreciate that diagnosis doesn't always improve on)

I really have learned so much from this thread, thank you so much to everyone for sharing and for being so kind and understanding to each other.

I agree with the above that people often only see us on our good days, but also that we often naturally hide things or lie about the severity for various reasons. As usual I’m awake again after two hours sleep in a lot of pain worrying I’m going to need another extraction. But whoever I talk to tomorrow I will tell I’m okay and they will know nothing about any of this.

Another issue is that the severity of so many of these conditions varies so much. I have IBS but it doesn’t bother me too much. My husband however gets it terribly as others have described here. Some people assume they know everything about a condition because they have it or know someone with it and assume everyone suffers the same way. I suppose my bruxism is another good example as for many it is just a case of a bit of pain, wear a bite guard and everything’s fine. I cannot stress enough about how much it has ruined my life and currently my every waking moment (which is most of them) is ruled by it.

For those who tried to help me, thank you. I have indeed tried hypnotherapy to no avail. I had Botox once which failed as they injected the wrong muscles but am due to try this again when I have my surgery soon. Other splints have either been tried or ruled out- I have an overbite so some are unsuitable. And yes stress absolutely makes it worse, ironically now the stress of the bruxism is making the bruxism worse?! I’m not a religious person but I genuinely pray this will disappear so I can have a life again.