Supporting a family member who has psychosomatic illness

[Trepann]

I am struggling with supporting my brother in the context of also providing support to ageing parents and I wonder if anyone who is in a similar situation could offer guidance. My brother has for around twelve years removed himself from regular life because he states he has severe health conditions that are so complex they cannot be diagnosed with standard medical knowledge. For six years he said he had atypical asthma. It was atypical in that tests (many, many tests, from various consultants) were all normal and eventually he got told he was breathing shallow. Then he got covid in 2020, joined various online groups about it and said he had long covid. He has had many consultant appointments, again all normal tests, but apparently that's all wrong because there's a conspiracy against long covid people and to combat this he spends all his time on the internet chatting about brain fog and imaginary brain clots and getting information from Twitter.

I don't dare examine any of this when talking to him: he often rants about prejudice against people who have his disability and how misunderstood he is. Just as he was with his self diagnosed atypical asthma.

But, our parents are getting older and I'm really struggling with supporting them physically and practically. I live some distance from them and I am self employed. There are many times where I need to be in two places at once but I cannot be. He also lives a distance from them but will not go to them because of his covid brain fog. When I try to talk to him on the phone he says he doesn't have enough spoons. If he does pick up, the conversation is curtailed by him experiencing brain zaps and needing to rest.

I have bitten my tongue for so long with him but I'm running on empty now. I need help with our parents and I can't stand hearing all this stuff about his Twitter illness.

Please, does anyone have any experience of successfully navigating this?

I'm probably not the best person to answer this because I spent two decades being made to feel by family and doctors alike that my symptoms were psychosomatic only to discover that they were in fact caused by a very real neuromuscular junction disorder. I am not sure I will ever forgive all the doubters and the ones pushing me to power through

That said. I thought this book was very good and I think you would find it helpful. It touches for instance on the Japanese "shut ins" (mainly men, who never really leave the house) and I think you would find a lot of it helpful in reframing your thinking

I’m afraid you can’t make your brother step up to help your parents. If he doesn’t want to, no one can force him to contribute. You need to decide what you can do in terms of parent-care and your parents plus social services will have to pick up the rest.

Aside from that, what is your relationship with your brother like? Does he have a job? Do you ever meet up with him? does he express a desire to recover and connect?
Or is he lost in his own world of illness?

Thanks both. I will maybe read the book when I feel calmer.

My relationship with him is ... awful, in all honesty. There's been a few crises with our parents over the past few years but if I do get to talk to him he minimises everything, brushes off my concerns, eg I realised my mother had dementia some time ago (and she absolutely does, confirmed now) but when I tried to discuss it with him for ages he acted like I was making a fuss and just kept on about his long covid and how awful his life was, sending long pages of texts about his brain zaps. I feel like I have to navigate around him in every dealing I have with him and it's exhausting. Every exchange I'm watching my words and being mindful of validating him while inside I'm screaming that this is bullshit, it's actual nonsense and the reason no one can find these multiple blood clots you say are on your brain is because they aren't bloody there and stop throwing all this shit at me, get off the internet and listen to me when I'm talking to you about your actual parents.

I would step right back from him. He’s not going to step up with your parents.

I guess.

I feel sad though as well, he's my brother. I feel like I've lost him.

You can't change him. He's a whole other person, living his life in ways that don't suit you. This is fine. Inconvenient, to be sure, but it's his thing and you can't change him. So stop trying. Who are you to change your brother, anyway?

You decide whether to indulge and validate him. It's your choice whether to listen, read his lengthy documents, to reduce contact, to nod & smile absently, tell him to stop whining on about his symptoms, cut contact entirely, detach with love or give him both barrels. Or any combination. Nothing you do will change him, so do what works for you at present.

It sounds like you could really benefit from the book @CassandraWebb recommended. Get at least one more of Ichiro Kishimi's books, too, they're less than a fiver on Kindle.

I pursued something similar, Transactional Analysis (best known as "I'm OK, you're OK") which predates Kishimi. They're different routes to the same kind of place. The Kishimi books are a really easy read 🙂

There's also the "Let Them" theory by Mel Robbins. Pick your author.

Here's the thing - Long Covid doesn't show up on standard medical tests in the UK, many doctors gaslight those who have it and it can be massively disabling and incredibly isolating, especially if people around you think it's all in your head.

I have it and went from being a very active wife and mother, working, doing voluntary work, playing sport etc to largely housebound and barely able to walk around the house.

Symptoms vary from person to person, mine are mainly cardiac. It can send a number of the body's systems haywire.

My health support mainly comes from the online rehabilitation group I participate in. Long Covid is now on my medical notes after I finally found a doctor who has taken the time to understand it and start working with me on medication that can help with some of the symptoms.

Lifestyle measures help, but aren't necessarily a cure.

I suggest you gently ask your brother more about what's going on before you leap to judge him.

Take a look at this: Long Covid – Stop Fainting https://share.google/s3RCMHRcf7Wx9erP5

The OP’s brother doesn’t have long covid. He had the issues before long covid. He’s just desperately scrabbling for an explanation/ diagnosis.

I think you just have to back away OP . It sounds hugely frustrating , do what you can do yourself and leave the rest to social services

Yea - I am in this exact position. Although my brother is actually ill (severe depression and psychosis). My parents are in their 80s with my father with a recent diagnosis of Alzheimer’s and vascular dementia and rapidly declining, there being various hospital admissions (keeps getting serious infections) and my mother having to care for him, which she struggles with a lot both mentally and physically (she’s 85).

I have PoA for my parents and manage their affairs, make practical arrangements for them (care for dad, respite for mum, finances, health advocacy and attending hospital/social care meetings etc), visit when I can. Am in the process of trying to sell their house and move them down here to my town.

I am my brother’s next of kin and basically do the same for him as my parents (although not moving him close to me). He did decamp to mine when he relapsed but I got him admitted to my local
hospital when he started threatening physical harm to those around him, including DD.

All the while keeping most of each parties’ issues and crises a secret from each other to protect their wellbeing - for example my parents have no idea my brother keeps overdosing and ending up in hospital (my mum is hanging on by a thread as it is), and my brother doesn’t know about my father’s diagnosis and rapid decline (as advised to me by his psychosis team).

My brother lives at the bottom of the country, 3 and a half hours from me, my parents at the top, almost 5 hours away.

I also work full time, and a have a neurodivergent teenage DD to support, not to mention a husband who went through his own MH crisis a couple of years ago culminating in suicide attempts (caused by collapse of his business due to the impact of Covid). One of the major things I’ve had to deal with is the guilt I feel for not doing more. But I also feel guilty about the impact it’s had on my job/daughter/husband at times.

I have got to the point (with a lot of support from MN in the past on a couple of threads on here, which you may find helpful for yourself) when I’ve had to step back in certain ways, e.g. I have limited my visits to both as I am simply exhausted, I have placed strict boundaries with my brother both in my head as to the amount of support I am willing to give, e.g. I no longer give his medical or social care teams any inkling that I may be able to offer him more support than I’m already giving, ditto with my parents. I also no longer respond to my brother’s emotional blackmail and selfishness (even though I know much of it may be as a result of his condition) and he is categorically banned from our house, at least whilst DD lives here; a rule I had already immediately imposed myself but reinforced by the council’s children’s safeguarding when the hospital raised a safeguarding concern about DD when my brother admitted to intrusive thoughts about attacking her when I got him admitted down here.

Priority 1 is my DD, priority 2 is me and my DH, then it’s them. I see one of my main roles being to ensure they are being supported by the right professionals - and to then trust those professionals to do their jobs; I now see myself as their advocate rather than their carer.

It’s been a rough 18 months - and I’m only now starting to find some peace and a return to some form of life (although saying that I’ve been awake since 4 worrying about my brother who took another overdose yesterday - he’s in hospital but not in danger). The guilt hasn’t entirely disappeared, but it’s better than it was.

I wouldn’t bother with him tbh

Who knows whether he has long covid.

He has been looking for illness before this though to remove himself from everyday life and all the heavy lifting that can come with it. He wants to be looked after. He sounds like he has mental health concerns before this long Covid.

Op, there’s not a lot you can do. Stop expecting him to step up with your parents. Step away. You have too much on your plate already.

I work in MH and have seen a lot of conditions like you describe. You have to reflect on what having those limitations or barriers do for your brother, what purpose do they serve? Does he want care himself? Or does he want a valid ‘reason’ for not being able to adapt to the situation with your parents. Many people struggle with the thought of their parents aging, and some will develop maladaptive ways of coping.
The fact is though that you don’t have the emotional bandwidth to support him as you are doing everything. Tell him this, or write him a letter, say that you’re doing X,Y,Z for parents and he can either help or not, but that long texts about brain zaps aren’t helping. Give him permission not to send excuses for not doing things, but also don’t let yourself become his outlet.
He sounds lonely.

@inigomontoyahwillcox I’m glad you are working your way to a more realistic position with your family. I remember you from previous threads. Your situation and your brother’s behaviour were appalling. 💐

@Trepann, your brother can look after himself but he’s no use nor ornament to you. Don’t waste energy or time expecting better. He’s been clear he can’t/won’t help. Whether it’s can’t or won’t isn’t really relevant.

I’m afraid you do what you can, and ignore him. Do not make any effort to keep him in the loop. You’re busy enough already without being his PA.

Thanks @PrizedPickledPopcorn

OP - one of the things that made things much clearer for me, was coming to the realisation that neither party (my brother, and my parents) were able to provide support for the other due to their own circumstances. So this left me as the only family member in a position to provide any form of support - but (after an initial period of running myself ragged) it was very easy to see that it was far too much for one person to take on - which prompted/allowed me to enforce some boundaries.

I suspect you are fighting a losing battle with your brother insofar as expecting help with your parents; he sounds very self absorbed (and thus selfish); whether this is due to an actual mental health condition such as factitious disorder (formerly known as Munchausen's) or just because he is being a deceitful dick.

So, hopefully you can bypass the period of "learning" that it was too much that I went through, and set some boundaries now.

Whilst I feel really sorry for you, saying an illness is psychosomatic has no impact on how it feels for your brother, i.e. very real. It might help you to try to accept that he is actually quite ill, by the sounds of things. I know that doesn’t help at all with your parents, but being angry with him, or telling him it’s psychosomatic won’t make him better.

whether this is due to an actual mental health condition such as factitious disorder (formerly known as Munchausen's) or just because he is being a deceitful dick.

It's interesting that the only scenario you don't imagine is possible is that he is actually physically unwell... Like I said up thread, I spent 20 years battling physical symptoms and trying to work out what they were caused by and facing head tilty judgement from family, friends and professionals alike before a switched on optician spotted the clue to my physical condition and a few tests later I had a serious diagnosis that explained everything.

I wanted to do everything other people could do. But the more I pushed the more unwell I became. Which makes total sense now I have my diagnosis