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?

Look into Kryptolepis for lymes. I am not in the UK but you should be able to google info in English.

Vit B12 deficiency - I have injections every 3 months but can still struggle with really unpleasant symptoms. They get worse as the next injection becomes due. Unbelievable tiredness, brain fog, a permanently nervous tummy feeling with diarrhoea & low mood 😢

I have TMJ too. It’s the worst - and really misunderstood. I try to explain to people but you really can’t get it unless you’ve experienced it long-term.

PCOS. Totally underestimated and disregarded in the medical world. 25 years ago My periods just stopped when I was about 19 and my Doctor just laughed and said "count yourself lucky most women would love that happen". Had a scan that confirmed PCOS and that was that, no treatment or advice, go enjoy the privilege of a period free life.
Left completely untreated I had no idea it could be affected by diet, I piled on weight over the years even through I didn't have a bad diet I just ate food that whilst isn't terrible is highly inflammatory for PCOS and makes symptoms worse. In desperation I went to a personal trainer for a while and I struggled to hit the weight goals he set me and I swear he didn't believe the food diary I was keeping and that I was doing all the exercises he gave me to do, I was even going to the gym.

After getting married I still didn't have periods and we were TTC with no joy. Went back to the doctor and got told lose weight and you'll be fine.
I hope it is getting more recognition nowadays, but it is miserable, you sprout a full beard, suffer acne, weight gain and infertility and it can cause Heart Disease, Hypertension, Diabetes and depression to name but a few and women simply get told to go lose weight.

Yes.
my DD’s boyfriend is diabetic and I am in awe of him and how he manages his condition. He is also a coeliac which adds another level of pain in the arseness to his life.

Two immediate family members with T1 here. So many consequences. It's really tough. One has a closed loop pump now which is amazing but doesn't make up for having the condition and it still has such an impact.

I hope speaking out on here has been therapeutic for people. I think most of the illnesses people have listed people know are awful but what really speaks is the sense of isolation here.

ill add in mine. Everyone knows cancer is shit. Breast cancer in my case. But what I was totally naieve to despite having two family members have it was the long term effects of hormone positive breast cancer. Something like 50% of women don’t stick to the long term treatment for hormone positive breast cancer. It’s that shit that people would rather increase the chance of the cancer returning and being incurable than do the treatment.

I feel it very acutely for me because I am young.

I really thought when I was first diagnosed that because my tumour was small and it was early I’d have a shit year with chemo, surgery possibly radio then put it all behind me.

instead after chemo they told me about a new drug I should take for two years. Almost guaranteed side effects include fatigue and explosive diarrhoea and crap immune system which means any fever requires a hospital visit.

im on two other drugs that induce an extreme version of menopause. Which has a whole load of long term risks and miserable side effects . I suffer every day with it and am bombarded with messages in the media about how my health will crumble without HRT. I hate my appearance.

im on induced menopause for 10 years at which point they hope ill hit natural menopause.

I was really keen to go up in my career before this but now can only work part time, I hate how I look and I’m just wishing my life away at the moment hoping things are better once i finish the two year drug (I’m one year in). Whilst everyone around me expects me to have moved on now because they see treatment as being over.

like I said, a lot of women weigh up the pros and cons and opt not to take these drugs. For me the drugs reduce the chance of cancer coming back from 1 in 3 to 1 in 5 and I’m under 40 so I’ll take them. But there is so much medicalised misogyny around the side effects being downplayed.

That sounds really tough O.P, not just your condition but the lack of sleep too. I really hope the jaw surgery helps. My husband had jaw surgery (different reasons) half his jaw was removed basically. The initial few days are tough after the surgery but he then recovered well. Hopefully it will be life changing for you.

Sending hugs to everyone on this thread.

Ehlers Danlos Syndrome and Mast Cell Activation Disorder.

I look healthy but I’m constantly in pain and it took years to realise there was something wrong.

My joints have worn out, I have osteoarthritis all over, early spine degeneration, tendinitis in hands and bursitis in feet. Some days I struggle to chop / carry things / walk.

prolapse bowel bladder and uterus which resulted in hysterectomy in my 30s and failed repairs.

anything made of connective tissue is affected, I have digestive issues, food sensitivity. Palpitations, dizziness.

i react to chemicals, foods, stress.

I’ve had multiple surgeries and emergency hospital admissions.

healthcare professionals don’t really have much knowledge and I have to educate them.

I can’t run, walk long distances, use make up products that i react to, get my nails done, eat gluten and many other foods that make me unwell. I have to wear orthotics and ugly shoes. All the things i enjoy are slowly being taken away, it’s depressing.

Chronic migraine. I hate it when people refer to it as just a headache. I also hate it when people who have a headache or hangover say it’s a migraine. It’s downplayed so much in the workplace as well and employers are terrible at supporting it. All the gaslighting makes you wonder if you’re the one going mad. Also, GPs don’t always understand. I had one that insisted mine were hormonal despite a lot of evidence to the contrary.

Yes diabetes. My 23 year old neighbour has just lost her vision to type 1 diabetes. Horrible illness.

I worked in an NHS rheumatology clinic for years, people just don't understand how serious, painful and exhausting those conditions are.
"It's just a bit of arthritis", no it bloody well isn't. Fir many people it's excruciating and affects all areas of their lives.

Anxiety. I’ve had it at its utter worse and you get people saying ‘I have slight anxiety’.

@topcat2014 have the injections affected your eyes?

Dementia
Autism
Fibromyalgia
Endometriose
ME
Chrohn
ALS
PCO/S
If I take a look around friends and family.

Sleep disorder. Without pills I have a natural wake cycle of about 20 hours, it sort of rotates around the clock over time and the best time to find me awake is at about 2pm. I sleep through alarms and when I hear them I switch them off in a daze thinking what is that terrible noise.

I was once referred to a sleep clinic and they rejected seeing me as they were only interested in looking at sleep apnea. Doctors just diagnosed me with "insomnia" and I haven't had an NHS prescription for about 9 months and have to use private care. This has only been available to me relatively recently. I still can only take pills every second night or less or I develop tolerance and they stop working.

I was a single mother with no help really and it meant I couldn't work for years till my son got older and could be left alone at night. I got no disability benefits for it and struggled all my life financially physically and mentally. It's never been taken very seriously.

I suffer with Rheumatoid Arthritis and Crohn’s disease at the grand old age of 31. I work 30 hours a week, along side having a nine year old, and every day is a real struggle. I have a strange sense of humour which is one of the tactics alongside several medications I get through daily.

I work in a MHH with Dementia patients as a MHP and this disease and the impacts it has on them and family is absolute soul destroying - I wish there was a lot more I and others can do to help. If anyone is struggling - I see and hear you!

Adhd. It's not about losing your car keys and being a bit ditsy. It's prevented me studying at a higher level and achieving more academically. I crave sugar constantly and this has ruined my physical health to the point I now have a serious health problem. I have depression which will never go away. I can't access treatment for the adhd because of the area I live in (poor and backward). I'll die early due to my untreated illness. My eldest son is facing the same problems, although he did manage to go to university and has a good job.

I have Crohn’s disease and it absolutely sucks. Not helped by the fact that I often look absolutely fine to other people. Last week a woman yelled at me for using a disabled toilet on the train platform with my radar key when I am “clearly not disabled”.

I have 8-weekly infusions of biological therapy and steroids in hospital which have thankfully helped a lot, but I’m soooo tired all the damn time.

Concussion.

Your dentist was right and wrong. I've been wearing tooth guards since my early thirties and I'd been grinding my teeth all my life. I agree it's mentally related but if like me you have an anxiety related condition like ADHD you won't ever cure the bruxism.

I also have Crohn’s and in my view developing a unique sense of humour about it is the only way forward. I’ve just had an operation to deal with an anal abscess and I felt like making that a joke was the only way to get through it and explain it to other people!!

Dry Eye Disease. It gets dismissed, even by a lot of Optometrists, as “just a bit of dry eye”, yet can be completely debilitating and life changing. It is not well understood and the support available is limited.

I have this and the onset is varied.
I woke up with full on hideous pain, bent like a paper clip. Before I was given the steroids, I would lie awake in bed, crying because of the pain I knew I'd have getting up. I eventually went to my GP in tears and was given prednisolone as a good guess and all symptoms disappeared in an hour.
My case is stubborn but I've had no inflammation or symptoms for about three years. Down to 1mg prednisolone a day.
I'm managed by a rheumatologist now, so regular blood tests to track infection.

OCD. Real diagnosed OCD, not just someone who says they are because they like to clean or they like their ornaments to face the same way. Real debilitating obsession. Just horrendous to live with.

I’m sorry if someone already said this, I haven’t read the full thread.

Yep, secondary to psoriatic/rheumatoid arthritis. I am a very resilient person and I’ve survived all sorts.But damn, sjogrens feels like it steals more than everything else put together when it’s bad. But even the drs don’t seem to care. I must have spent £5-6k in the last decade on eye drops that promise to cure everything not last seconds and “artificial saliva” (vom!).