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?

Another vote for Type 1 diabetes. Hands down, no question.

I am in a pretty good position to comment because (1) I have several chronic ailments including a symptomatic autoimmune disease, at least 2 of which have been mentioned above and (2) I was wrongly diagnosed with Type 1 diabetes and lived with the symptoms of Type 1 only for it to turn out to have been a pancreatic issue which resolved.

Type 1 diabetes is an absolute nightmare which takes over your every waking (and to some extent sleeping) moment. Every single thing you do, you need to be thinking about it. Your blood sugars are not just affected by what and how much you eat, but basically everything else - how well did you sleep last night? How much have you exercised recently? Are you warm? Is it sunny? Where are you in your menstrual cycle? Are you stressed? etc etc etc. It's a relentless administrative burden, like going through life with a plate balanced on your head, but if that plate falls off you might suffer serious injury or even death. You can never escape it. It's not like many other chronic ailments where sometimes, just sometimes, you get time when you are not actively symptomatic/your life is not being completely dictated by your ailment. Just monitoring and treating my blood sugar levels felt like a full-time job in itself.

Then the second part is the fact that practically nobody understands how life-changingly awful it is. Other diseases are awful but people know they are awful. With diabetes I found people hadn't even the tiniest idea of how much my life had been turned upside down. When I told her about my diagnosis, my best friend said oh no, then sent a picture of herself sunbathing. Generally, people acted as if I had just been diagnosed with a food allergy rather than a life-changing, serious disability. The only way I can convey this to people who haven't experienced it is that if someone told me I could choose between Type 1 diabetes and a guarantee of no diabetes for life but immediate amputation of a foot, I would pick the amputation.

Since my experience I have set up a direct debit to T1 Breakthrough (used to be called JDRF) and have mentioned them in my will. I have not done this for any of the chronic illnesses I actually have, because I feel like the gap between the awfulness of T1 and the public's understanding of this is absolutely gaping and I can't think of a better way to spend money than in spreading awareness, improving support, and investigating a cure.

Epilepsy. Everyone’s experience and combination and degree of symptoms is unique but my Mother’s experience was horrendous and utterly debilitating.

She developed temporal epilepsy out of the blue. It got so much worse than I’d anticipated. She had tonic clonic seizures, absence seizures, complex simple seizures, complex partial seizure and auras.

She also suffered visual hallucinations, speech that came out as utter nonsense,feelings of impending doom, déjà vu, feeling as though she knew everyone in public places, nausea, dizziness, anxiety, smells and tastes were so intense that she could barely eat. limb pain after seizures, severe headaches, nausea, badly bitten tongue. Her tongue still bears the scars. She badly scalded herself once during a tonic clonic.

The confusion after a seizure was awful and long lasting. She could become verbally aggressive and agitated(And that isn’t her at all) then it would take her ages to gain consciousness again. Then she could be wiped out for the day and have to sleep constantly due to the after effects of the seizures and even when she wasn’t having full blown seizures she was experiencing auras.

The seizures kept changing too from nocturnal to daytime from occasional to multiple per day so you were always on edge. The whole thing was incredibly traumatic for both of us, particularly her feelings of impending doom. You can do so little help and that is so difficult to deal with when your loved one is so distressed.

Thankfully she was one of the lucky ones and we eventually found a combination of medication that worked for her and she has been seizure free for 15 years but the trauma still lingers in the background,

I have a rare condition called Relapsing Polychondritis. I was diagnosed 3 years ago. But ive had it all my life.
It affects the collagen, connective tissues, vascular system and bones

I've been in and out of hospital since I was born with weird issues that were never looked at as a whole.

Hip surgery at 2

23 sets of grommits from 2 until 8

I had bowel problems since I was 15

Severe allergic reactions needing epi pens at 17

Fainting and severe vomiting at 20

A stroke at 24

Menires disease at 26

Another stroke at 27

Epilepsy at 27

Lost the ability to empty my bladder and became a cather user at 27

Developed vitaligo at 27

Tinnitus from 28

Rheumatoid Arthritis at 31

EDS at 40

Constant nose and mouth ulcers all my life

6 frozen shoulders

Partially dislocated hips so many times I can't remember all needing to be put back in place at A&E

X? Broken bones

Was diagnosed with TB 3 years ago, had to come off all my immunosuppressants

Had a hell of 6 months when I lost so.much weight I looked like I was dying
Couldn't walk so was in a wheelchair.
I couldnt get out of bed without help

The TB nurses couldn't understand why I was reacting so badly to the treatment
It is tough but shouldn't have been so bad.

After 4 months my ear went necrotic and black
The cartlidge started to fall off. GP sent me to A&E. After 6 visits and a lot of being prescribed cream that did nothing. I eventually saw a senior A&E Constant who knew what it was.
And eventually my whole life made sense.

Nothing has really changed health wise but having a "label" has opened so many doors to treatment- and being seen as a proper patient

Before I was seen as a nuisance- like someone to get rid of quickly as how can someone have so many files of notes and not be crazy

The difference is shocking

I phone my rheumatology team now if im in a flare and get seen in 2 days
Before it might have been 6 months or longer.

Atm I am stable
But need regular checks as it can affect my trachea and heart
But for now I'm happy to live with a label

And that’s when they work.

We nearly ran out of sensors last month because they just kept coming off or failing, and I kept having to ring Dexcom for more and then you have to hope they turn up.

They also break down my child’s skin so his skin is a mess, and it then means less sites to put on.

They fail, they fall off. I’ve had to leave my job (as a nurse!) to go to school to replace my child’s sensor or insulin pump several times.

People have no idea what Type 1 actually means. There is a lot of ignorance surrounding it. ‘Don’t eat too many sweets you might get diabetes!’. Fuck off. Educate yourself.

Chronic digestive issues with severe flare ups.
It's so restrictive and debilitating.

It's not the pain and symptoms that are the worst part, it's just how relentless and never ending it is and I think that's probably the same for a lot of the things mentioned here, it's like being struck down with severe flu or stomach bugs constantly....you know the relief you get after you've been sick and then wake up feeling better...with chronic issues you know that even when you feel relief that you're probably going to get hit with it again in the next day or two anyway. It's relentless and soul destroying.

Also insomnia, when mine was at its worst I was so suicidal, I knew I wouldn't do that to my kids and made sure I did nothing to lower my inhibitions just in case, I remember some nights just praying (I'm not religious) to be able to make it through the night without harming myself because it was pure torture.
I later remember reading that there's a very specific type of 'hopelessness' associated with insomnia, which was very accurate in my case.

Waves to you from the sofa. 👍🏻

Lipoedema. Pain and tiredness as well as shame and humiliation because it looks like obesity.

Bipolar disorder. Most of the time you’re depressed,
especially as you get older. And you know that the happiest most delightful experiences of your life are in some way unreal — the product of hypomania — and (meds much more effective at treating mania than depression) that you may never experience them again.
also life ruined by foolish things done during full-blown mania — suddenly leaving jobs, relationships, affairs, overspending, arguing with people.

IBS. Debilitating, incurable (though it can often be managed) and extremely embarrassing. It’s not well understood by the public and people often spend decades in denial, trying to avoid having to address their diet. There are so many misconceptions, like it’s due to poor diet (it’s absolutely not, which just makes it all the worse), or assumptions about weak immune systems (it’s not a virus!) and because it’s not life threatening it’s just not taken seriously. Yet I know of many people who lead very small lives because of this syndrome.

Fibromyalgia- another of the ‘hidden’ disorders. Hubs is a sufferer and is in constant pain. Sometimes he’s in so much pain he flinches when I hug him 😭

@Funnywonder I couldn’t read and run. My ds also has OCD. Signs were there when he was younger, but it really hit at around the same age as your ds. They don’t refer to OCD as ‘The Bully’ for no reason. It is so destructive for the person suffering from it and everyone around them. I have two other dc and it had a massive negative impact on their childhood, as well as seriously affecting my marriage.

I just wanted to say, my ds is now in his 20’s. He’s been on meds since he was 16 and also had a combination of Psychiatry and Psychology support. Although we had to pay to go private, even though we couldn’t afford it and it essentially bankrupted us. The therapy definitely helped, but the meds made the biggest difference, as he has ASD as well and found it hard to engage with the therapy. We weren’t keen on him going on meds at first, but honestly, the improvement was so clear, even on the starting dose, that we were reassured it was the right decision for him. He now has an annual review with his Psych and hasn’t needed any more support than that for a few years.

He is living at home, attending a local uni, has a lovely friend group, a social life and is doing really well on his course. His life is still very restricted compared to his peers, but he is so much happier than he was when he was a teenager and has coping strategies that make all the difference. Life at home is so much easier for all of us and calm has been restored. You couldn’t pay me enough to go back to his teens when essentially we were all held prisoner by the OCD and it drastically affected family relationships. It’s important to get support for yourself as well as your ds to cope with it.

I just wanted to let you know I understand and really feel for you. I know, when ds was 13 I was desperate to hear that it things could get better, as it honestly felt like there was no hope at that point. I am not going to say it’s all a bed of roses, he still has bad times, but he/we now have better tools for handling those situations and getting through them and we also know what is likely to precipitate them, so can try to manage things better to reduce their frequency and severity.

Cystic fibrosis is fairly awful.

It's often not the diet that needs to be addressed, it's the nervous system that is the issue for many.

I live with 2 adult children. My oldest has T1 diabetes, I agree with everything others have said about this. And can I mention stupid idiots telling him off for drinking a cola because he's having a hypo and saying 'don't drink that, you will get diabetes'. Being investigated by security because he had to inject in a public toilet, some idiot saw the needle and thought it was drugs. Another idiot telling me he was drunk, he was having a hypo. I could go on.
My youngest has an anxiety disorder and as a result also has OCD. I'm fed up with celebs who think being tidy is OCD. No it bloody well isn't! It's a crippling condition where his hands are raw from washing them and we can't walk down the street without him checking constantly that he's not lost anything, that he hasn't walked through petrol, and countless other checks. He knows it's not rational, but he has to carry out those rituals.
My sympathy to anyone living with a chronic illness. It's tiring in itself.

hEDS is so swept under the rug. The shit we put up with is ridiculous. It is so debilitating.

Custer headaches are horrific, thankfully I haven’t had an attack in years.

I have coeliac as well as EDS (it’s a very common comorbidity, as is ASD/ADHD, which I’m currently in the assessment process for) and I agree. Coeliac is death by a 1000 cuts. All food has to be planned in advance and checked, and checked again. If other people cook for me I just don’t ever 100% trust the food because even a tiny cross contamination can make me really poorly, and the effects can last for months, not just a few days. It’s not my biggest day to day struggle, but it’s absolutely more of a ball-ache than most people realise.

It’s infuriating. I was diagnosed 10 years ago, at 47, and until then I’d been dismissed relentlessly. I don’t get big obvious dislocations, but my joints are very unstable and sublux all the time, but subluxations aren’t visible on X-rays etc, so even some Drs don’t believe you’ve done anything. When I saw a physio for sacral pain they told me my sacrum wasn’t displaced because “it’s a fixed joint that doesn’t move”. I put their hand on it and shifted my weight and asked them what exactly was that thing that was moving then?

I wake up with a headache every morning, and have to wait for my meds to kick in before I’m functional, and ironically have to get up because being upright and moving actually helps my head clear. Last year I had two sets of steroid injections in my spine/SIJ and the couple of hours of my lower back being pain free before the local anaesthesia wore off were surreal.

I don’t understand the stigma of HIV. No one things the same of lung cancer or diabetes or cervical cancer etc

Thank you so much for that @CabinFevered. It has made me well up! You’re right about being held prisoner. That’s exactly how it feels. I am really pleased that your son is doing so well now. Honestly, it gives me hope. Thanks again for taking the time to leave such a considered post.

Depression

If come to the conclusion there’s a lot of stupid people on Mumsnet who can’t conceive of someone struggling with a condition all their lives, being constantly mis diagnosed as lazy, forgetful, over emotional, controlling, boring, rude, inflexible and can’t understand the relief that person feels when they get a diagnosis which means they’re none of those things.

it comes from the 1980s and the fear instilled in the general population- it was scary-there was a complete lack of understanding, I can remember a big thing about toilet seat covers that flushed to stop it spreading

Exactly. Although treatment has moved on massively so that, thankfully, HIV is now a chronic manageable illness, people still remember the tombstone ads, the fact that it’s (for the majority) contracted by having sex, and together with the lack of knowledge / ignorance / unwillingness to learn experienced, this can make living with it a challenge and sadly people still die or become isolated and withdraw from care. Many people still have little knowledge of how it’s contracted and how it’s not contracted.
Examples of things that still happen - ostracisation by family members, treated differently by healthcare practitioners and co-workers, given the last appointment of the day by a dentist or refusal to treat, declined a pedicure, tattoo or other cosmetic procedure.

This advert was produced in Scotland a couple of years ago

This runs in my family. It must be like riding a roller coaster. The medication has horrible side effects like weight gain and tiredness. I hope you have good support.

I’ve just nearly poured orange juice over my chips instead of vinegar. I’d gone into a micro sleep.
I’ve been asleep all afternoon, dragged myself onto the farm to finish evening stables and I’m headed back to bed as soon as I’ve eaten.
I’m not actually fully awake at the moment, I can tell.
I wouldn’t wish this on anybody.