How to deal with sister's 'illnesses'

[soveryfedup]

hey ladies, I hope you can help me at all.

My sister has been 'ill' with different illness for most of her teenage and adult life. She was finally diagnosed with lupus and has been in and out of hospital with it for about 10 years. She is 28, has never worked, never lived away from the family flat (my mum lives in the family house down the road), never travelled...

My concern is that she is making up her illnesses, or in some way making herself ill for attention. She used to steal and lie as a child for attention, then graduated to breaking bones and finally my mum found out she had actually bought a plaster kit off the internet and plastered her leg up from toe to hip and told us all she broke it. I only found this out years after the event and my mum didn't even know at that time or how long she had been doing it. How she pulls all this off I do not know, but her medical knowledge is vast. She even pretended to break something else and went all the way to a and e with my mum before she started questioning her - sister was 'convinced' she had broken something but really, she hadn't. it was like she thought she could fool the x ray or something.

Whenever my mum leaves the country she gets a lupus attack and ends up in hospital on ICU then in a ward, usually with some form of random infection. She is ill, she has temps, operations to find the cause, morphine for pain... the hospital have secretly sent in a psych to see her and he thought she was mentally ill but can't section her on no evidence or real harm and she can only have counselling if she seeks it. The drs now try to be abrupt with her and make being in hospital as boring as possible so she 'gets well' and leaves. She complains and tells them what to do. My mum doesn't hardly visit her any more in hospital and knows it is all bollox, my brother never does (he is very affected by this, poor thing), I live on the other side of the country and have a toddler (thankfully) so don't visit either. I text every day. when i am ill she is always more ill which is so annoying and weird.

She also manipulates us with her lies saying so and so didn't visit her when they did, or that nurses and drs were maltreating her when they weren't, or that she was in ICU when she wasn't.

I can't talk to her about it, if I accused her of making up all this she would say I am evil and never talk to me again :( I just want her to be well, what can i do? Shall i carry on ignoring it? Support her in her 'illness' even though she is playing me for a fool? Has anyone any experience of anything like this?

Sorry it is so long and thank you so much for reading. 15-20 years of this is hard to paraphrase! thanks again.

Sounds to me like Munchausens, deliberately pretending you're I'll to get attention/sympathy from others. (munchausesns by proxy is where you pretend someone else, usually your child is ill)

I don't know what you can do about it though although it does sound as though the doctors treating her are aware.

Perhaps google it and see if it sounds like her and then see what's suggested.

Are you saying that she has been misdiagnosed with Lupus? Or are you suggesting that Lupus doesn't really exist?
IME it is very hard to get a diagnosis of Lupus and requries a lot of testing over a significant period of time.

I took it to mean she thought she'd been misdiagnosed. Nowhere did I read that she said she thought it didn't exist.

you cant make her well.
only she can.
you just have to set your boundaries in your dealings with her.
look on the depression fallout board for advice on setting boundaries
www.depressionfallout.com/

It is quite hard to fake your way onto ICU. I think there's more going on here than meets the eye.

To clarify: because ICU admission is generally based on stats rather than patient describing how they are feeling.

Lurking on this thread

It sounds like 2 things are going at the same time

1. She has a genuine problem; lupus. This makes her genuinely unwell as you can't fake ICU admissions
2. She has munchausens or some form of personality disorder that makes her seek medical attention. People with long term genuine chronic health problems can sometimes develop some OCD traits. This can make them very difficult to manage.

Unless she is at risk to herself or others she can't be sectioned. The hospital needs to put a plan in place to deal with her frequent admissions; it would be awful if she wasn't taken seriously when genuinely ill.

She needs to accept psychiatric help. You can't do this for her. It must be so hard for you to watch, HTH.

But what about the paranoia? Lack of visits and mistreatment?

Doesn't sound like paranoia to me, more like attention seeking manipulation. If it is personality disorder, they can sometimes be suspicious / paranoid.

Oh and if psychiatrist thinks she's mentally ill there is an awful lot in between doing nothing and sectioning her so I don't understand that bit either

The difficulty is she doesn't think there is anything mentally wrong with her. She has capacity to make decisions so they can't force any kind of treatment onto her.

Quite right! Do you think that the attention seeking indicates a personality disorder?

Yeh maybe. It can be. Or she could just be a difficult patient, but the psych who saw her did think there was something wrong, I'm guessing personality disorder. Feel free to PM me if you want stealthpolarbear.

Thank you, thank you for listening and responding. I cannot tell you how long I have had this bottled inside.

I thought munchausens. My mum thought so too and I desperately hoped she might act on it some way, but a year later and nothing has been said. The illnesses are always all about attention from my Mum. We had a family tragedy when she was 7 and she has really never got over it but my mum also had her own issues over it and couldn't reach out. It's dead sad.

She is very, very compos mentis and alert and bright about her illnesses. She does have Lupus and she does get ill, what i wonder about, and please, please enlighten me, is that these illnesses happen when she is stressed or upset or when she needs my mum's attention. If my mum leaves the country she gets ill and goes to hospital. She says to us she isn't eating in hospital but secretly eats (nurses tell us). Is there any chance that some of these 'attacks' could be psychosomatic?! I know that sounds crazy, who can get into ICU like that... but this is a girl who has broken her own bones for attention :( Could there be a mixture of real and mental illnesses that combine?

Lupus is the final diagnosis she was given but was generally in the absence of any other possible explanation. She definitely goes on ICU but there have been strange isntances about this that she has lied about too. no-one, not my mum or me seems to know the whole truth about anything, she just drip feeds info to us, and as she is over 18 she totally can control what we do or don't know. this keeps us in her thrall, we can't just leave her in hospital and want to know what is wrong, but we might get different versions. It is manipulative and unkind and I find it impossible :(

Drs and nurses are aware that she is possibly a problem patient, but she does have illnesses (reoccuring sepsis at the moment, vomiting blood - they have to keep operating to see where this blood is coming from) that have to be treated. They can't dop anything mental health wise because she is very with it, over 18, actually ill and not sectionable at all.

it is so confusing and honestly, i hope I am just a heartless cow who cannot be nice to her desperately sick sister. I just can't help but feel this is largely a mental, not physical problem (wityh the caveat that yes, lupus exists).

Am just so sad and just so thankful that you guys are here to listen and even tell me I am deluded. thank you.

face I think you have it. thank you and yes, it is desperately hard to watch her spend her young life this way. I wonder how, without confrontation which would blow our family apart and i would lose her, it will end and i love her to bits :(

mad Psych thinks she is sort-of ill and shouldn't be pandered to in hospital but can't do anything unless she asks for help. She definitely, definitely does not think there is anything mentally wrong with her. But she must know breaking her bones and having fake plaster casts for non-broken bones is weird. Right? She has self harmed too, very obviously, then denies it with a vigour and defensiveness that is frightening.

Don't know much about personality disorders, I shall do some reading.

Thanks peeps, so hugely grateful for your time.

Feel free to PM me if you want.

Could she be hurting herself to end up in IcU? It could be nothing to do with lupus. Sepsis suggests infection. It's so hard because you prob don't have all the onformation as she's keeping it from you. Some of it will be psychosomatic or delusional ( ie a fixed held belief that she is unwell). You will just have to keep chipping away at her to engage with mental health services. Does she have a good relationship with her GP? Sending hugs and love to you and your family.

My experience of lupus is limited and dreadful.
When I was younger I was on a rheumatoid ward for 3 mth. There were a lot of people there pretty much as there were ward overflows and we weren't infectious.
A few of those patients were ill but well ish in themselves and we're only fulfilling a proportion of the criteria for a lupus diagnosis. They felt as a whole that people thought they were mad, making it up etc etc.
I would imagine that living in these circumstances and awaiting meeting all the criteria for an illness as terrible as lupus might end in fairly strange behaviour.
My other experience of lupus was my actual darling sil's sister who died from her illness.

I would ask you to try to stop doubting your sister. I know that that might sound facile but it's hard to fake lupus.
It's IMO impossible to fake your way onto an ICU ward.
I'm not trying to minimise your worries, please don't that at all

Oh perry I'm sorry to hear about you, and your sisters, illness. I don't doubt that the OPs sister is genuinely ill for a second. Lupus is horrible. However, some of her symptoms sound like a mental illness too - these things can often lie hand in hand. I hope you are recovering from your illness.

This is a useful information sheet about the way Lupus can affect people's brains. Lupus can be associated with depression and other mental illnesses. There simply isn't enough information in the OP for all of us on an internet forum to even begin to pick apart what may or may not be happening to the OPs sister.

Perhaps it would be helpful if a family member offered to attend the sister's next consultant's appt. if only to better understand the way in which Lupus manifests itself in the sister's particular case?

Very good point pip and fab info sheet.

Lupus is an autoimmune, autoimmunes can be effected by stress and made worse by it, it's actually possible she relies unhealthily on your mother for support, gets stressed when things arn't as she feels she needs and has a flare.

I don't doubt she could have some MH problems, but often self harm is categorised as attention seeking when it isn't anything of the sort and other disordered behaviours that frighten or upset others are interpreted in the same way by both family and professionals becasue of the frustration they make them feel. Be careful you arn't interpreting something incorectly because of how you feel, she may be self harming in order to feel better and not really give two hoots about how anyone else is going to react, or even be suprised when they notice and care - almost the opposite of attention seeking. It could quite easily have nothing to do with how anyone else acts and purely be her trying to cope with her own thoughts and emotions - granted in an unhealthy manner, but still nothing to do with anyone else.

Denile is quite normal in my experience - even getting angry with the denile, especially if you don't want the attention it's causing and what are often unhelpful comments about any behaviour like self-harm or disordered eating. Just becasue it seems wierd and is destructive doesn't mean it's got anything to do with anyone else other than herself. She may even not be taking care of herself and ending up sick as a result - just becasue she can't find it within herself to care for herself not because she wants to go into hospital.

Also be careful if she is telling you she isn't eating and the nurses are saying she is in secret - does she mean she isn't eating enough and knows it's harmful? You have to eat well if you have lupus to keep your weight up and stay healthy so you don't get infections - a couple of bites here and there taken guiltily when no one can see is not actually eating in a real sense. Is she purging what she does eat? This kind of thing is often much more complicated than people who have never been there think, it's not easy, but she isn't thinking like you so your logic may not work for how she is acting as it's so far outside of healthy and so disordered.

thank you so much face, you are kind.

hey Tickle, thank you so much for your post and considered view of my sister from another point of view. I really would like to be more sympathetic and less angry with her and hopefully you words will ring in my memory when i am trying to deal with her. I know about self harm but hers is for our viewing pleasure. My sis most definitely does it to talk about it but of course she does it because she is also hurting which is why I am trying to see what to do about it. If we piss her off she gets ill :( maybe she simply can't cope with her emotions but I suppose until she seeks help or even recognises this as a problem, i can't do much but be there but my GOD I can't give her the attention she needs. she is utterly, utterly draining and gives absolutely nothing back.

thank you for sharing your experience perry I am so sorry you lost your sister. I am terrified i shall lose mine. I shall try to get on with my sister as just a person deadling with lupus and desperately try and be kinder. I cannot possibly explain the complexity of my sis on here but did want to bring up the topic and see what reactions were, which kindly you have helped me with.

I will look at that factsheet now pip, thank you. We (still) have limited info on lupus and my mum just isn't interested in researching it and my sis is the least bothered about finding out causes or how to manage it etc.

I shall remember you can't fake lupus. Because in truth, I think she does. She was ill doing weird shit waaaaaaay before the lupus came along. Maybe i need to go to counselliing and work out my issues with her. That would be a step forward I can make. now to find the time and cash :(

all the best people, thank you x

thank you for the link cest am looking at it now. i didn't really think she could have depression, I suppose i thought it was way beyond that. when any of the rest of us are depressed we tend to take to our beds ands withdraw, I didn't think you could be such a busy depressed person. but of course, you can, how stupid and shortsighted of me. excellent stuff, I can work with that, thank you.

pip if you have any other resources on lupus that you think would help me understand my sister better and support her i would be so grateful if you could pm me them. I really could do with some help! I hope you re ok x