Have you ever come across munchausens by proxy?

[Namechangeone]

As per my username I’ve name changed. It’s quite an identifying situation so I’m not going to go into too much detail but don’t want to drip feed either

Edited for clarity: Has anyone experienced munchausen by proxy themselves or known someone that has? I could be wrong about this but it's what myself and others suspect.

Im middle child of 5. Us older 3 lived with grandparents, youngest 2 with parents.

I unfortunately have had quite bad luck when it comes to health. Various ICU stays, operations, long term conditions. No empathy from my parents and now grandparents unfortunately have died.

My younger brother who grew up with my parents has perfect health, had many scans after our mum claiming my brother can't barely walk/has back pain/stomach pain all sorts. Had every test going from teens until now (he is late 20s). Even went as far as paying for private tests because they didn't believe nhs consultants.
They've bought him a wheelchair/crutches for when things are bad - this typically happens when I've just had a hospital stay or there's an event coming up.
In privacy he walks around at home normal. He lives next door in a house they built for him but stays at parents house.

Recently they took him to A&E saying he needed emergency surgery as he's suddenly paralysed - scans were clear. This was day 1 after myself being diagnosed with lymphoma.

He has had every scan going that you can think of and multiple opinions. Also my brother and parents have been offered psychiatric support many times (and declined)

At home he doesn't need to even take paracetamol but if there is an event, he's in agony and needs pain relief and looking after. Apparently can't take tablets so it's calpol 🤦‍♀️
They have a prayer WhatsApp group for him & regular social media posts.

Im not envious of the lack of empathy I have - I'm quite happy in my own bubble & I wouldn't want to live this fake life. I had a good childhood with my grandparents, although miss my gran especially a lot with everything going on in my personal life.
I do have therapy/counselling etc & continue to throughout the years.

Everything had gone back to "normal" with them all but my brother is getting married in a couple of weeks and the wheelchair etc is back out. This happened after the A&E visit one day after my lymphoma diagnosis.
I can't get my head around it all.

I just basically wondered has anyone else had this experience or similar with a family member?

95% of the time it doesn't bother me, I have my own life, but then I do get times where it bothers me (like tonight for some reason!)

The point one user made is exactly why I raised the issue ref people not being believed. Stress makes most conditions worse. I have a condition that the NHS refuse to acknowledge. Most of us end up having to self finance or crowdfund for surgery. I stand by my belief that most cases where people are accused or suspected are genuine medical conditions - based on my experience and all I have seen / witnessed.

What I cannot understand is how children can go through multiple procedures on the USA when MBP is then found to be probable cause. This happened with the Gypsy Rose case and another one I read about last night. How on earth does that happen! It's the absolute opposite here I've noticed where young women with genuine struggles digesting food get fobbed off as mental and can access no support at all.

I don’t want to sound like a broken record but…
he ONLY ACCEPTS CALPOL
If you are DESPERATE FOR RELIEF and IN PAIN do you not think that saying “No I can only have Calpol” is somewhat suspicious?

We're talking in general generalities, not about op's brother specifically. I don't know how hard that is to comprehend?

(Although having said that...when I flare I can only have liquid meds as I can't swallow, and I can't have any really strong painkillers unless in hospital as they are contraindicated for my condition)

Also, most people don’t actually harm their children but still create a psychological dependence on illness.

Health anxiety would be normal in a young man whose mother has dominated his life and spun a narrative of his frailty and illness.

We usually work to empower our children to overcome anxiety and poor health. We enable their independence- to the extent some people here haven’t had a diagnosis until midlife because they’ve coped so well against the odds. We teach our kids how to go to school with mysterious tummy ache, ear ache etc. I used to go to school at lunch time to give my foster DD a special ear hug to help her ear ache that didn’t have a physical cause.

When a mum does the opposite, that has an impact even if she doesn’t poison her child.

TBF it may be that taking it in tablet form has a reaction and it's cheaper/more easily available than an Adult oral suspension? Who knows.
(though oh to see paracetamol in any form as a pain killer!)

Any one thing on it's own can mean anything, it is when specific patterns (or groups of red flags) emerge that questions get asked. Even then there may be reasonable explanations, it just gets less frequent.

I don't wish to offend the highly religious, but the spreading the word of the gospel directly connected to his requests for money, ( especially for something avoidable - choose an accessible church like most wheelchair users!) makes me itch.

Pantaloons99 What I cannot understand is how children can go through multiple procedures on the USA when MBP is then found to be probable cause. This happened with the Gypsy Rose case and another one I read about last night. How on earth does that happen!

I suspect lots of different factors, including US Dr's or their representatives effectively bill insurance co's, the state, or the individual, per procedure, in a way only private health care does here?
Surgery shopping is a thing there.

Some Dr's use continuous investigation including operating to puzzle solve.
One of my (excellent) UK consultants is very blase about 'I wonder if X is happening? We'll make you nil by mouth, and see if there's an empty theater tonight and take a look." He's senior enough to to "bag an anesthetist' and treats operating as a really mundane event, and little different to listening to a stethoscope. He presents it as being nothing.

Many Dr's understandably start at a point that a parent wouldn't want their child to unnecessarily suffer, so probably questioning the parents narrative comes later rather than earlier? They possibly want to be thorough?

Most of us wouldn't assume a parent might be tampering with specimens etc.

I think Dr's both fear missing significant medical conditions, and maybe fear complaints/litigation that significant medical conditions weren't properly investigated/ treated?

Lots of children's illnesses are diagnosed partly or totally by the symptoms parents report, especially in young children.
If a mother takes a young child to the GP and says she gasps for breath every time there is a dog in the area, most GPs would prescribe an asthma inhaler. They would not insist on testing the child by bringing a dog into the surgery.

That isn't something I would see as a red flag.

I'm not very good at taking tablets. Sugar coated ones are okay, or small ones, but bigger ones I can struggle to take.

When I have a migraine, I feel very nauseous and really struggle to take tablets. To get one down I have to break it into quarters, but then I struggle with the amount of water. I have dissolvable co-codamol for exactly that reason. I have been known to take child's calpol when I haven't been able to get the co-codamol.
I've also asked for liquid antibiotics the last couple of times because the previous time they gave me these huge ones you couldn't break up and they also made me feel sick. I asked the doctor if she thought me totally stupid, and she said a number of adults ask for liquid because they can't take tablets for various reasons.

But going back to the concern that people who have certain illnesses are prone to the accusation of MbP. It's a bit of a circular problem.
Because there is often fluctuations in illness, and that it's not testable, more process of elimination, means that it's an ideal illness for someone to try and get diagnosed for. Lots of tests, and no proof, and they can be "better" to do fun things means someone who is carrying out MbP will choose to mimic it.
But that means that people who have those illnesses are more likely to be accused of MbP because disproportionally they're illnesses chosen to... etc.

I mean there would be no point trying to make it look (but not try and cause it to happen) like you have your kidney failing because they'd scan and see immediately you were wrong. You could do it once, change doctors, possible get another doctor to check, but because people don't change doctors in the UK that much it could quickly get marked up as a red flag. I suspect that's easier in the US for that reason.

Pantaloons99 What I cannot understand is how children can go through multiple procedures on the USA when MBP is then found to be probable cause. This happened with the Gypsy Rose case and another one I read about last night. How on earth does that happen!

I will tell you how. A for profit healthcare system. We used to know a woman who literally had an operation per year. For all different reasons. It was like a hobby and her main topic of conversation was her latest operation. Could never understand it at the time and thought something odd was going on. Realise now it was clearly munchausens. She had private healthcare when it was not common place in the U.K. (at least I don’t think it was 20 odd yrs ago).

There are certain operations that you can get if you fake symptoms. People who do this research online.

Caramilk · Yesterday 20:47

I wish vitamins had the size of the tablet on the bottle! Some of mine dissolve, but you are so right to say about antibiotics. I suppose there is a reason why they are so large.

I don't think MBP is really as rampant as posters think. As far as neurological diseases go, how can you fake reflexes? That is the problem with many sceptics, who refuse to believe a disease can do so much damage. Long covid is being described. I had private insurance for about 20 years, but I first signed on at our practice in 1968 so they really know me inside out. I signed on with one, and when he retired, the new one. Continuity is a very precious thing. When people keep going to lots of physicians, eventually any fake condition would be noticed.

I too have a condition that the NHS refuses to acknowledge. First thing I was told when I said I had it was it causes no symptoms. But no one can explain my symptoms. Virtually everyone I know with my condition has similar symptoms.

Out of interest, how can the nhs refuse to acknowledge a medically accepted condition? I’m curious to know what sort of conditions they don’t accept!

A lot of people who have had illnesses undiagnosed ARE actually disbelieving it though. I have read most of the posts on here.
I get they're angry that they haven't been believed but they obviously haven't encountered real cases of MBP.
The OPs original Q was has anyone experience of it, and as sorry as I am for people with real physical illnesses and pain, I feel their anger is seeping through this thread and some are trying to discredit the OP.
Your statement saying you bet most people do have a real illness isn't based on any fact either, that's also scant evidence and opinion.
I have seen a case of a mother and adult daughter who were mentally ill, not physically. It wasn't undiagnosed illness. I know it for a fact. It cost the NHS and social services thousands of pounds and countless hours. The mother caused her daughter to have a mental illness because of decades of it and ruined her daughter's chances of leading an independent life.

You have not been at the mercy of the system quite clearly. Ok, so a multitude of clinicians don't even understand or know what POTS is! It's a form of dysautonomia. It will be on the rise now as it is somehow being triggered by long COVID we notice on our groups. I have Ehlers Danlos Syndrome also. This is for many an absolutely crippling and disabling genetic condition. Most people cannot get a diagnosis so have to pay to see leading specialists. They hardly cover it in medical training. The impact and what it does is completely ignored by the NHS. It is truly horrific for many of us.
Finally, I don't have ME but all my conditions make me housebound and exhausted. People with ME have and do die. This is probably one of the most mistreated conditions. Another one is gastro paresis. Ehlers Danlos Syndrome causes this. People's bowels stop processing. I've witnessed at least 4 young women in hospital being accused of eating disorders when they have this well known complications

Especially when paid for privately.

Sorry I’ve not been active, I’ll have a catch up now. RL has been hectic.

To address some things, I think I have generally already but just in case.
I have said all along that I don’t want to be identified and the specifics of this are really identifying back to myself & my family. Especially as we aren’t from a big area.

-I am 1 of 6. Only female, us older 3 raised/lived with grandparents as mum felt she couldn’t look after us & wanted to focus on what is an important career. She’s admitted she hasn’t felt maternal towards me particularly ever.
I fully understand it could’ve been PND.

-I have been unwell 90% of my life and currently have newly diagnosed lymphoma alongside autoimmune conditions. 1 which is extremely rare and took almost a decade to diagnose so I do understand the frustrations of what it’s felt like not to be believed by HCP personally.

-Every test going has been done on my brother all at my mother’s request, second opinions had, private opinions sought, explorative procedures- some really invasive ie laparoscopic & not only once. They “hospital shop” too.
Brother now freely admits to friends/family he doesn’t have pain, mum pushes him etc. We are all ages 28+.

-He is getting married, a religious one set up by parents. Wedding day imminent and wheelchair back out (diagnosed myself lymphoma the same time). Prayer WhatsApp & other groups set up alongside a go fund me.
Parents aren’t short of money. Live a lavish lifestyle due to mums career as mentioned.

-Mum/Brother regularly been offered mental health support and had suggestions of psychosomatic. Soon as that’s mentioned it’s a new GP surgery, new consultant etc.

-I think some PP think I’ve no empathy or some sort of jealousy/disbelief. Please know that’s not the case, I’d support my brother regardless. I feel for him and my dad in this situation.
Dad doesn’t encourage any of this but has been subject to years of coersive control and will never leave. Believe me when we’ve tried to help.
My mums family has even tried alongside vicar.

-My siblings all have the same opinion as me - as do orher family & now some of the wider community.
They don’t really say much, they’ve their own lives etc.
I do too, I just care & want to support. I posted this to see has anyone else been in this situation, not to have angry comments.

-I’m as LC as I can be but I’ve DC and health issues, if I go NC it would have to be to them all when I relay on siblings partners for help when I’m in hospital, I also have a bond with my nieces and reciprocate having them when I can.

I hope I’ve covered all now between this comment and the others I’ve done on here. Not much more that can be said by me, many have formed an opinion either way.
I could be completely wrong and it not have been MBP, I just wanted to see if anyone experienced it or could help.

I have a therapist to protect my own mental health. One day when I’m better and all the children (mine/nieces etc) are older, I think I will have to go NC just to protect myself.
I have tried every way to support my brother, believe me.

Sorry also I wanted to say thank you to the genuinely helpful/supportive comments, it’s appreciated so so much.

OP, whatever any of us think or say, it's clear that the behaviour is really hurtful and damaging to you. Even if your brother is genuinely unwell and this isn't M, MBP, you aren't being supported or treated well by these family members. I don't think you can do anything for your brother, just protect yourself. ❤️

Thank you 🥺 I think I need to for myself & my DC’s sake.
I would do anything to help him, I really would. But maybe it’s beyond what I can do.

No I haven’t which is why I’m asking. Dh had a nasty case of long covid and they were very thorough with tests etc although ultimately there was no treatment to offer. The NHS does seem to recognise the conditions you state though as there are pages dedicated to them on the nhs website? They acknowledge they can be disabling. I suppose as they are very rare most Drs won’t have hands on experience of dealing with them. Presume there are a lack of specialists.

They do reference on the NHS websites but testing is very limited and so so many are fobbed off due to lack of understanding. Many of us have come across doctors who don't even believe it's a thing. Often there's information all over the internet about conditions and yet you can face multiple doctors who contradict it and don't even believe it exists.
A large proportion of us have had to pay for thorough accurate testing and treatment options. I wonder if the fact your husband is male plays into it.
They kept telling me anxiety. It does cause anxiety by it's nature which doesn't help. I have no savings left as all my conditions had to be diagnosed privately. I have confirmed diagnosees now but they still try Gaslight, especially now with the state of the NHS.
There's also a huge increase in this Functional Neurological Disorder diagnosis which is incredibly damaging and simply nonsense.
I probably come across angry because I am. So many of us suffer horrendously but it isn't easy to 'see' the impact of these conditions. They also change from one day to the next in terms of symptoms and presentation which many people find difficult to get their head round.
Hope your husband is ok and no lingering problems!

I get the being caught in a rotten painful situation that you can't break free of without losing what little you have.

Ultimately you want your mothers love, care and support and it never was forthcoming. Ultimately you want your brothers life to be different which seems unlikely unless a long way in the future.

It maybe his new wife will want more from him than to take over his care from your mum while living in her shadow next door, in which case things will get 'interesting.'

But I think the biggest thing is that no one can help anyone who doesn't want to be helped, so yes this is beyond anything you can do, they don't want help, they are only exploring things that would be an acceptable diagnosis to them.

When I was accused, I wrote to GOSH asking could this be ASD or are his idiosyncrasies being caused by my poor parenting? I wanted to be cleared of being at the root of it, but was heartbroken that he wasn't ok in school, and would have taken public crucifixion and psychiatrist either side of me for the later, if it just made Ds do Ok.

You need to use some of the emotional energy you are losing to it all to help yourself and nurture yourself as best you can.

Not sure if it's the 1st time you've mentioned having DC's, but yes you're right to 'keep in' with the saner members of the family as a disabled (possibly LP) as not having a support network as a disabled parent is ironically one of many red flags in some situations.

I hope some of the debate has helped you form ideas that you can take to your therapist in how to live with what you can't change while still enjoying the part of the family that you're able to have a less complicated relationship with.

A lack of specialists and also really our of date knowledge/a lack of curiosity or time

With my condition (myasthenia) very few GPs know about it or recognise the key symptoms (I had ptosis at all appointments where I went seeking help and got dismissed). Then even if they do think to test for it many don't realise that the basic blood tests only test for the most common antibodies, and so might say the test is negative when actually far more specialised tests are needed (EMG/SMG/specialised antibody tests /tests for congenital myasthenic syndrome). Hence a lot of people go for years battling clear Myasthenic symptoms but ignorance means the are told they don't have it if initial tests are negative. I am lucky to live near a specialist centre so thankfully got diagnosed swiftly once an optician spotted my symptoms. But many people see GPs /neurologists with inaccurate or out of date knowledge and therefore get told they don't have it when they do. Or they get a diagnosis of CFS/ME or FND and the myasthenia (which at least is somewhat treatable) is missed

A lot of people with similar conditions have similar stories.
Thattillyrose on Instagram tells a powerful story of doctors telling her her (hugely debilitating)symptoms were all in her head before she finally found a specialist who did the right tests
@that

Because it's what in my case they were taught.

I have 2 arachnoid cysts on my brain plus a rare neurological condition. I've been told that I'm imagining the pain I'm in and would I like counselling?

There are a lot of conditions that don't show up in tests. One of mine doesn't but you can see it if I cover one eye.