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 really think what pps have identified about HCPs just almost subconsciously dismissing women's pain is really true.

And it spills over into other things. I kept going back and back to the GP with Ds1 when he was small. When we finally got referred on I was perfectly capable of reading the handwritten note (upside down) on the letter being held by the consultant saying 'Over anxious mother'.

Turns out that DS1 DOES have autism. He DOES have adhd. He DOES have tourettes. He DOES have anaphylactic allergies. He DOES have cold urticaria (literally allergy to the cold) etc etc etc.

“healthcare professionals don’t really have much knowledge and I have to educate them………. I can’t run, walk long distances………. All the things i enjoy are slowly being taken away, it’s depressing.”

It’s incredibly frustrating. Explaining my symptoms/issues to Drs (& dentists!) and seeing their eyes glaze over because they don’t believe you.

Erythromyalgia. It’s rare and people think your skin goes a little red and warm. No, it’s excruciatingly painful. Your skin burns like it’s being held in a fire. It’s not well understood by a lot of doctors. The only treatment mine offered was capsicum cream, which makes it worse. But the doctors don’t know what to do. People think you exaggerate the pain, but it’s so intense, it’s unreal. I’ve used cold gel, but the heat on my skin counteracts the cold almost instantly. You shouldn’t use ice, as it can cause tissue damage. I have used ice but it melts so fast and the relief only last a few seconds. I get it on my arms mainly and I don’t know what to do anymore.

Would something like this help? You can keep them in the fridge, so if you had two you could alternate them.

https://cosi-care.com/products/the-puffer-itch-roller

I don’t think fibro is ‘made up’ but there’s concerns that people are given a fibro diagnosis before all other conditions have been properly ruled out. As such it’s often a misdiagnosis, rather than a ‘made up’ condition. There are Hypermobility/connective tissue disorder specialist Drs who point out that unless you’ve had a full range of movement assessment, including passive movement, skin assessment, muscle tone etc, it’s possible that Fibro is actually hEDS or similar. The Beighton score is deeply inadequate, and only assesses some joints, only assesses active movement, and doesn’t account for stiffness from compensating muscle spasms. All fibro symptoms are the same as hEDS but fibro doesnt include ligament laxity and joint instability. It’s important because the management of the two conditions are different and if you mange hEDS as if it’s fibro you’ll impact functionality and quality of life. I’ve seen clearly hypermobile people given a diagnosis of fibro and had their hypermobility dismissed as ‘benign’. I’ve seen people with ‘idiopathic’ scoliosis told that their hypermobility isn’t connected, or the source of their pain. And so on. Makes me want to scream.

Plus people don't want to know the full extent of your problems.

If they ask how i am I tell them I'm fine.
I don't tell them I couldn't eat because I'd a raging headache or sat in a&e for 16 hours.

Migraines.

Oh gosh, and I'm sure there is a misconception around these micro sleep moments. Some might even presume someone is drunk rather than having this medical condition.
Sleep deprivation is a form of torture - I can see why it would be so difficult to live with and not being able to fully function day to day.

the only way to get decent care is seeing specialists privately, even then it’s a long wait. I have insurance but often end up paying extra for specialists whose fees are higher than the insurer covers.
then they’ll give you a private prescription, some of them have been £100+.

Yep. My son (diagnosed aged 22 months) finds it maddening. He hates living, feels tortured by his own brain and sees no part of his autism as super, powerful and or a super power! I've always wondered why this "super power" thing is pushed so heavily.

MI5, MI6 and GCHQ hire ones that have it. Most don't and it does a great disservice, imo, to those who don't have it to have a problem with the same label when their actual life problems bear no comparison.

I get that some people view their autism in a positive light but too many people generalise especially with the super power thing
Its not a super power in our house either my son is very disabled by his autism
If you have met one person with autism you have met one person with autism as the saying goes.

I remember when DS1 was diagnosed with ADHD at 11 after being diagnosed with autism at 3. It had been a shockingly hard road. I explained in a meeting with the SENCO that we were trialling him on medication to see how he got on with it. At a certain point i sighed and said 'Poor kid, it's been so rough on him' and she started - protesting loudly and quite shrilly; 'NO No!! He's not a poor kid- he got a SUPERPOWER!!!'. i felt - offended. That she was dismissing and minimising the very real pain, effort and despair both Ds and we had gone through, all for a fucking patronising trope.

I understand the concept of trying to do away with a sense of shame etc which many people have, but to minimise a very real struggle just made me angry.

How very ignorant of her
She needs toi educate on just how disabling it can be
I would have been furious,if somone hsd suggested it was a superpower for my son

Yes to you all above!

And if your child doesn't have this "superpower".... This one thing that they're told they're going to absolutely excel at above everyone else... then what!?

I had no idea it could happen in the nipples , I have it in my hands and feet , I've learned so much from this thread

My adult son has ASD and ADHD, he's stated firmly that if one more person, particularly a celebrity, says either is a superpower he's going to scream. You are quite right, people don't understand how debilitating either is. Every day is a struggle, and he's supposed to think he has a superpower?

My friend’s son has autism (he’s 9) and it is has such a huge detrimental impact on his life - it breaks my heart seeing him trying to navigate all his difficulties. So many things that others are able to take for granted are a daily battle for him and it seems so unfair.

If he was my son and someone tried to tell me he had a superpower I swear I’d absolutely lose my shit at them.

How dare anyone minimise and invalidate what is an extremely debilitating condition to live with.

He says if his brain could be reconfigured he would do it in a heartbeat. It's so sad.

It’s so annoying, I must scream “I just want to be normal” every day. People don’t understand it at all,

People don’t understand that you have very little control over your response, that things that seem normal to others can make you think you’re being attacked by a tiger..that you can’t do anything about screaming at people when you feel under attack and unsafe. That the whole world seems upside down and backwards. Imagine doing every single task you do in a day backwards whilst standing on your head, that’s the level of effort it takes to do anything, constant state of wondering if you’re acting appropriately imagine everytime you do anything you have to pull up the rule book/directions. Imagine how exhausting this is.

imagine never being allowed to be you, because people tell you it’s wrong, imagine being told the very essence of your being is wrong because it’s not “normal” imagine what that does to your self esteem?

No it’s not a super power, but we, who have to live our lives like this are incredible and brave people with what we have to surmount every single day of our lives (and imagine doing all that with zero concept of time)

I have adhd and autism - imagine having an overwhelming need for chaos and order, spontaneity and rigid timetables. So on top of everything else you have two competing drivers trying to help you navigate as a stranger in a very strange land, being judged for every single out of step thing you do.

I had a patient with this once, it was awful. And it’s so rare and difficult to treat.

People of a certain age will remember the dont die of ignorance campaign it terrified an entire generation
The treatment of HIV has come on in.leaps and bounds since the 80,s and its now seen as a mangeable condtion rather than the " Death sentence it was back then and it was very much stigmatised back then because the sexual,lifestyle backgrounds of the people who were predominantly being dignosed with it.

I'm so sorry to hear about this.

Spinal injury. It isnt just not being able to wall, it is a lifetime of every part of your body affected.

I don't know if this will be helpful for you but I started taking a low dose of amitriptyline for IBS a couple of years ago, it has transformed my life!