Some of you may remember me from a year ago, when I found this forum after my husband was sectioned for the second time and we were divorcing. Well long story short, I had to leave home and found just how few friends I really had in my time of need. Also how strained family relationships were when the chips were down and I needed somewhere to stay. Once my husband was given a real diagnosis (paranoid Schizophrenia) and real support in my absence, things got a lot better and we fell in love again and called off the divorce.
I’m happy with him. But I’ve come to realise how isolated and lonely I feel from friends and family. This was before all the drama last year. Friends drifted away over the years and I guess I quite often had personal problems and caring responsibilities so this impacted things for me- and I hear this just happens naturally as people get older (I’m now in my 30s).
When I went through this difficult time, I tried to reach out to people and reconnect. Most people didn’t want to know, a lot don’t even respond to messages. But I feel like there’s a lot unsaid sometimes and a stigma. I only have a couple of friends that reciprocate / contact me to see how I am who truly accept us and the diagnosis. But I think many see my life as choatic and don’t want to know, or maybe it’s just laziness and people are in their own bubbles.
I guess really what I wanted to post / ask, is if others have found their friends and family drift away from them after the diagnosis of a loved one? If they have faced stigma and isolation as a carer? I feel like I’m carrying a huge burden all the time and can’t rely on anyone. But I know this is somewhat my fault because I could have chosen to leave. I guess I just want to hear from people who actually understand, not looking for any advice
Heck yes, in my case it’s my son. I have stopped saying it’s schizophrenia because people seem to freak out quietly. I now just say he had a chronic serious health condition.
I realize you may not be able to back pedal on people who know but going forward I guess.
We trusted one of his former employers with his diagnosis bc he ended up in the hospital and his employer showed all kinds of concern. But then they eventually stopped giving him hours and he found another job but they said he damaged a counter and then they decided he was suicidal and dangerous, neither of which turned out to be true, but they sure scared us when they called and said that.
I think it’s probably common to have your experience for those of us with a loved one with SZ.
Yep we’ve experienced issues with employers too. Even where they don’t know the info they are very much lacking in understand generally. And you seem to lose if you disclose them or not really. Damned if you do, damned if you don’t as the saying goes.
I’m sorry you’ve had similar experiences. We don’t have any family support groups where I live so it feels so lonely. I’m lucky to have found this forum.
I have a bit different perspective on this by being both a caregiver and diagnosed. My closer friends growing up knew about my older brother with bipolar disorder and would tolerate me relating my experiences and issues with him in measured doses as long as it didn’t overwhelm our relationship. Things changed somewhat when I returned to them after I became ill.
Ideally we hope all our relationships meet our needs, our friends and family exhibit perfect acceptance and give everything they can with endless capabilities and capacities, but beyond such fairytales is harsh reality— nearly all relationships up to a point are transactional, have limits and our family and friends aren’t perfect and have problems of their own. It doesn’t hurt to ask when in need, and support sometimes comes when least expected from unexpected sources, but it will inevitably be found lacking when needs are great.
There’s an old joke about a guy who goes into an establishment to order a Polish sausage and is indignant when the response is “you must be Polish” why would you assume such things? And his answer is “well first off, this is a hardware store…” What I’m saying is in recovery from SMI you need different friends and support services and you need to forgive your existing friends and family for not being the free and perfect, yet completely untrained mental health and social work resources you’d unrealistically wished they’d be. And when you find their and other support lacking, find support from within or elsewhere.
Yeah, it sucks that the world isn’t a perfect place. Society and especially your friends and family may disappoint you, but the only way things are going to change is to change the way you interact with society as a whole. A tall order when you’re dealing with a mental illness first or even second hand, but I’ve yet to hear of an alternative.
Personally, I can’t see how this wouldn’t happen. Most people cannot confront the ills that others have. My daughter lost all of her friends. I lost most of my friends. We have both made new friends. She often does not tell new friends she is on an anti-psychotic. I don’t either. It isn’t really their business.
In some parts of the World, for example Northern Finland recovery from psychosis is all about relationship. This is the route to better health. They have studied how the way we behave towards each other affects the way we feel. In times of crisis the whole family network is embraced to aid recovery. No stigmatisation, no diagnosis, just a process to encourage openness and acceptance. Relationships are improved, trust develops, suspicion and worry subside, understandings offer relief. A warmth of fellowship and companionship develops. Trust, self-confidence, self-esteem return as fears subside.
Coming to the US. ISPS-US Bringing dialogic processes to the US healthcare system. From theory to accessibility 7.11.23 9-11am EDT.
I am sorry I couldn’t find the direct link for you, but you should be able to find ISPS-US using a search engine.
I hope you enjoy the talk