dealing with loneliness and social isolation as carers.

Hi @Shaz51. I missed the Topic Tuesday discussion as I only got back from the trip to Mum and Dad's place late evening. Have given it a read through now... thanks for tagging me in.

One of the things that I find most isolating is that others don't understand that MI can be a very long term problem. It's hard when someone asks how things are going with our girl, and are then surprised/incredulous/critical at the fact that it's still just "as bad" or getting worse.

Strategies around that are a hard ask... often the simplest one is to smile as if it's all OK... but that kind of smokescreen is isolating in its own way. Whaddya do when you haven't got the energy left to give the other person an extensive psych education?

i love my mr shaz , but i can not drive , this stops me big time
but i have found Facebook , sane forum and keeping in touch with family by phone or texting helps me from going into loneliness
is there any way we can reframe or re-work our schedules to feel more in touch with our needs as carers?--- it is very hard , when i might have time , others do not have time
this afternoon i was able to get my hair done before the doctor rang me and then i texted mr shaz to pick me up
then went to the chemist for mum before closing time
then with my physical problems as well , need to re arrange my time xx

@Frogger @Icare20 Hi @Lotty

One of the things that I find most isolating is that others don't understand that MI can be a very long term problem. It's hard when someone asks how things are going with our girl, and are then surprised/incredulous/critical at the fact that it's still just "as bad" or getting worse.

very true my @Smc

i get that with my families with mr shaz , mum , MIL and myself

Hey @Shaz51, I don't drive either.

In my case, it's been mostly a matter of circumstances not really leaving the opportunity to learn. It's not usually a hassle, but there are times it would be useful.

hello and welcome @Blip

Hi all,

Apologies, I'm still trying to navigate the forum and work out how to use it.

We live semi rural so driving is a must but living semi rural is isolating in itself, as is the fact that I have 4 children all with their own special needs. My youngest is immunocompromised so we have very limited contact with the world otherwise we end up in hospital for months at a time. It's hard enough trying to get friends to stick around through that.

It is my eldest that had complex MI and I find the stigma around it is shocking. If I am honest with people they think I'm just a negative person but if I downplay it then no one understands why I'm always so exhausted.

It's so hard and I find health professionals like to pretend they care, but really, I get no support from them just a pat on the back and a cup of tea.

Hi @Blip.

Another one of the misunderstandings I find we need to deal with is the assumption that there's been something done wrongly in the person's upbringing. That can get very judgemental very quickly.

As well as our MI Older Daughter, our Older Son has generally high IQ but with a specific learning disorder, which wasn't reallly acknowledged by his school. Again, we had to cope with upbringing being blamed for that. I was in turns crying with relief and furious at the false accusation when a neuropsych confirmed that upbringing and education had no effect on his neurological function.

The other bit of confirmation that it wasn't drastically misguided parenting is that 3 out of our 4 (including Older Son) have come out as resilient and functional adults/teenagers, despite being under severe stress.

My first marriage, that my eldest was born into, was very physically and physiologically violent, so I've blamed myself his whole life but even without knowing our past, people are VERY quick to make judgements about upbringing when we discuss MI. I hadn't actually thought of that until you said it, but yes, it is so true!

@Smc

Strategies around that are a hard ask... often the simplest one is to smile as if it's all OK... but that kind of smokescreen is isolating in its own way

I used to do this a lot.

On of the most freeing things I ever did was when a work supervisor asked how thing were wit the family. I started with the above mentioned smile and yea we all good. Then the smile Kind of broke and followed up with. Actually things are not ok. Darling is in hospital after sa and under supervision due to high risk of follow up.

Felt so guilty for divulging that info but at the same time a huge weight was lifted.

Previous admissions the only people who were aware darling was away were obviously the children but my mum and darlings parents.

It is a good indication of the level of social isolation when darling can disappear for up to 4 weeks and No one even notices she is away.

I suppose what I am trying to say by that example is that it can help..a lot..to have someone safe to confide in. Finding that 'safe' and trust worthy someone is the challenge. I have opened up a lot more since that time. Sometimes possibly too much. But it is so much healthier than bottling it up and trying to manage alone.