Not trying to start a class war here between those with different levels of function, just want to know if anyone else has had similar experiences…
By October last year, I had noticed that my mental health was declining a bit. I’ve got a high-stress job that involves a lot of interactions with the public, and many of them are NOT friendly. People take a lot of their crap out on me. Anyhow, both my pos/neg symptoms were up, the amount of medication I needed was up, and I felt like I had to do something to try and improve things.
Talked to my pdoc and he suggested I attend a support group for other people with SZ. I had to drive 2 hours each way for this as there are none local to me. So, I went.
I was the only person in the group who was working at all. I was the only person in the group who was actually living on his own. Driving a car, etc. These poor folks were all much farther down the SZ spectrum as it’s called nowadays (or so I’m told). It made sharing difficult as I couldn’t relate to their problems well and they couldn’t relate to mine. Every time I tried to share about my difficulties at work or spousal/parental stress, I would get sullen glares or be told I was obviously misdiagnosed.
This lasted for about five weeks. At that time the group’s ‘facilitator’ politely suggested I should stop attending. It seems my presence was causing others to feel poorly about themselves and harming the group dynamic. I stopped attending, of course.
That’s the third time this has happened to me over the years. Anyone else here who is having or has had problems getting needed support because they are too high functioning as well?
I’m just curious.
Nobody at the VA thought I would be able to go to school or work. But I have done both now. Blew their minds but I have never been to any groups with schizophrenics.
Being in the VA system I was always in group with PTSD patients.
i work 50 hours a week and ive been considering a 12 step program but i feel like they are normies compared to me. I feel isolated at all times among all people. And I don’t find enjoyment in work or anything else. In related news, I’m inhuman and completely out of touch.
I have actually met a few other sz folks who also work and/or maintain relationships and families. They help me feel less alone. It took about four years of telling everyone I met about my schizophrenia before I finally found others who were closeted. I’m grateful to actually have things in common with people for once in my life. Before, I always felt like I didn’t fit in anywhere.
Side note: I hate the high-functioning/low-functioning distinction. It was made by neurotypicals as a way to further pathologize and dehumanize us. Every single one of us is better at some things and worse at others. I know plenty of folks here who don’t work, but have a much higher capacity for empathy and kindness than some of the self-described high-functioning folks.
@velociraptor I am sorry that happened to you. People need to realise that Sz and other severe mental illnesses are fluctuating illnesses that lie on a spectrum in terms of functioning. Even the most high functioning among us will have days/weeks when they are below par and need extra support.
All of us whether high,medium or low functioning have areas we cope better at than at others. Being high functioning isn’t a “Get out of symptoms free” card.
It’s also how medical professionals categorize us. There is apparently a functioning spectrum for those with MI and I wound up being party of a multi-year study for HF SZs as I float over the top of ours. Turns out that what I thought was poor short term memory isn’t because a neurophysiologist tested my cognitive function some months back and I come out on top of most neurotypicals.
Basically, I’m a unicorn. Don’t seem to fit in anywhere.
I have the problem that I’m good at compensating for my deficits, and so people think I’m higher functioning than I think I am.
I am aware that I am, apparently, intelligent and such, but it feels like my surroundings expect more of me than I feel able to perform.
People keep telling me “I’ve seen you do [thing], so you should be able to do [other thing] just fine”
“Maybe you’ve just been misdiagnosed.”
Or the classic “Since you’re able to do [thing] sometimes, it’s probably just a matter of motivation. You need to try harder and stop being lazy”
“You could cut your medicine use in half if you just got some exercise and ate better”
I have a similar problem/struggle. I work A FT government job & am attending college to finish my bachelors. I struggle everyday and sometimes cry in the bathroom at work because of my psychosis and other symptoms but I keep trying everyday … I try to discuss my issues that I’m Having trying to function like a normal Citizen while hiding my Sz/MI but NOT MANY people can relate to me. Someone who has a similar situation which I have not found would be nice but I gave up.
Others see me pull up in my German car, wearing my business suit and heels talking on my iPhone and assume that I have my sh*t together. BUT little do they know I just ran a red light cause I made a bet in my head that if the light turned red before I made it under it that I would die by 5:00 pm!!! So trust me!!! I do not consider myself better than anyone else … never have and never will… I struggle with demons every day… some days are good and some days are bad… but I get up everyday and fight this ■■■■ Wether I’m tired or not
People at school, even friends, often tell me I need to stop being tired and drink some coffee.
How am I supposed to explain to people that while coffee does perk me up a bit, it also makes my mind race?
And that I’m tired because I’m mentally exhausted and have negative symptoms?
Even though most people know about my SZ, they think that because I’m managing to so well and “don’t seem sick”, my symptoms aren’t bad at all and I should try normie solutions to my problems.
Sometimes I wonder what my associates/coworker would ACTUALLY think/expect from/about me if they REALLY knew my thoughts… like would you still expect me to “use my head I’m smarter that that” or “be the better person in the situation” or “pull most of the weight in the group project” or “would you still cut me off in the parking lot” or “ leave your food in the mic and walk away for ever when you see me there waiting” I’m seriously sure If they knew that I have intrusive thoughts or at least took my MI seriously these people would act different… I think I just went off subject
That is kind of my point. I don’t see a reason to divide us by functioning level, as if “low functioning” people are somehow different than “high functioning” people. It also makes folks who aren’t doing well feel like recovery is impossible. That they weren’t lucky enough to have “high functioning schizophrenia” and so they’re hopeless cases. When the truth is, those of us who are where we want to be in life only got there because we had a lot of help, and worked extremely hard. And anyone who is classified as “low functioning” could achieve just as much if their doctors would stop shunting them off into the low functioning box and actually believe in them.
Back before Christopher Reeve started moving again, doctors told patients who had suffered paralysis that their condition was permanent. That they would never recover. Then, once someone showed folks recovery was possible, more and more of them started doing better and regaining the ability to move. The difference wasn’t some breakthrough in technology. It was that doctors stopped prescribing strictly palliative care, and actually gave recovery-focused treatments and therapies.
I see the same thing happening in the SZ community. People are told they’ll never recover, they’ll never work or get married or have kids. And so they don’t. And the few of us who do immediately get told we must be some different category, because we could never have been like those low functioning people. But we are the exact ■■■■■■■ same, and you know it. The difference is that we believed in our own ability to recover, and received treatments and therapies focused on recovery instead of survival.
I had psyches tell me they were surprised by my case because on the outside I did not present myself like the other sz there. Meanwhile my head was ramming and jamming with sz. At the time I was at the worst levels I was ever at. Hehe.
Boy do I know that one. People thinking I should be able to do something because I’m articulate with superior verbal intelligence.
@ninjastar I can see no problem in recognising functioning as long as it’s looked at sensibly , and used to better recognise the area or areas a person needs help with.
The thing is to recognise functioning is not uniform across all domains . We all have our comparative strengths and weaknesses .
@firemonkey I would have no problem with functioning labels if that was how they were treated, professionally. But it isn’t. I’ve worked in that field for about 8 years now. The admins rank who would benefit most from services based on who is already doing well. The people who have made the least progress by age 21 are the folks who get the fewest resources moving forward.
This is a very sad thing to hear. I would have hoped things would have moved on in the 40+ plus years since my first diagnosis of Sz.
Back then such a diagnosis was the kiss of living death. Little was done to maximise your potential . By the time I met my wife I was being labelled a chronic schizophrenic fit at best for a group home and at worst a long stay ward. It took my future wife believing in me for me to make any progress. Over the years I’ve not had much help for the difficulties I have from mental health services, and have done best with help from my wife and youngest stepdaughter.
It is true that most people with sz are not getting the help they need because people believe they are lost cases. With proper treatment, including psychoeducation, medication, therapy and assistance with work and daily life, people with schizophrenia can improve substantially and often recover. Unfortunately, this doesn’t seem to be a common way to treat schizophrenia, even though strictly economically speaking, it is sensible to give this kind of treatment. Life-long disability is awfully expensive.