How can I help my diagnosed ‘friend’?

Family
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To begin, and for some context, I’m 21, M, and autistic. I’m also not from the US nor is English my first language, so my apologies for any misused jargon.

So, as the title implies, someone very important to me has been diagnosed. I have known him for four years now. I fell in love with him hard. Terribly so. He reciprocated, through out of fear, I did not confess at first (our country isn’t that accepting, nor our families I believe). Everything seemed normal, aside from the fact that it became obvious I was the only person he’d speak to. Back at our highschool not even teachers nor most classmates knew what his voice sounded like, or what he looked like, because he’d always use a mask. Not for me, though: he let me in in almost every possible way. Then one day he fell sick (he’d caught some bloodborne disease, teachers said) and stopped showing up. At first, he’d text me normally, and fondly, then he’d disappear for a month. When he wrote back to me, he’d say I should ‘hide our conversations so no one knows we speak to eachother’ and then disappear again. It was back and forth like that for three and a half months or so. When he came back, he was a completely different person, he had no topics for conversation, he was tired and stopped doing exercise (which he loved), he was rash and rude, going as far as ignoring me as I laid crying just a few meters in front of him (I did not want him to find out, but I had nowhere else to go) and scolding me for lending another friend my phone bc she needed to make an urgent call. Then he stopped talking to me altogether. I had become so attached it hurt like hell. Well, back then, I had no idea. On the last day of school, he found me sobbing in a corner and I told him everything. He hugged me, dried my tears, and told me he was not gonna leave me, ever. A few hours later though, as he was finally leaving for his hometown, I tried to hug him one last time and he pushed me away, just to tell me ‘You know I hate hugs.’

We stopped talking for a year and a half and, out of the blue, last year, he came back. Out of the shock alone, I fainted on the spot. When we resumed talking, he began telling me concerning things. He said he was being spied by two people who lived next to him. He named them. He said they were reading his mind. Halfway through our conversation he stopped me and told me to shut up because ‘they were listening’. As it happens, he also began sending me religious videos. I never knew him to be religious nor he did he attend any religious ceremonies at school. That day he told me I was the only one he’d ever trust, but confessed he did not remember any of our time together during highschool. Not a single thing. That same day, he disappeared again, but returned the next morning to apologize. I told him I’d wait for whatever time he wanted to take – after all, he was my first love. We’d speak once in a month, sometimes texting, sometimes by FaceTime. I’d play him the guitar, and we’d enjoy time together, then yet again I’d bring up something from our past and he’d insist it never happened. That’s when I knew .

Last month we began speaking quite often. That’s when he told me. I tried to stay calm but I think he noticed I was a bit freaked out. He’s only taking two meds and only one is actually a treatment for schizophrenia. He told me he was running out of money and he had already stopped seeing his treating psychiatrist, and would stop taking the meds soon. I offered help but he ghosted me. We haven’t spoken since.

Honestly, I’m worried sick. I know his parents but I don’t have their contacts, nor I think they know he’s told me. I don’t even think they know we’ve been speaking again after everything that happened, as from what he told me, he has cut off everyone else he knew from highschool. He seemed fine last time we spoke but for some reason I think something bad is about to happen. I don’t know if there is anything else I can do. By now, I have given up the idea of ever picking up what we had in high school for his sake and I’m happy to be there for him in any way I can, but I don’t know what is next, how to reach out (if I should), or…

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Welcome to the forum :waving_hand: I wonder if reaching out to his parents might be a good course of action? I know, from our family’s experience, that the families can become quite isolated after a schizophrenia diagnosis. I have wondered why none of my son’s past friends and relationships didn’t care more about him. He still cared about his friends, but some of his early behaviors must have ended up separating him from his social circles.

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Thanks for your response. That’s an interesting angle - perhaps it is not a great idea after all. In your case, perhaps it is not the case that his friends did not care, perhaps they thought he was shutting them out and, unaware of the situation, believed leaving him was the best course of action. That happened to me; I had no idea back then and genuinely thought he hated me. Perhaps that happened to them aswell?

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You bring up a valid point. I had always thought that his friends were put off by some of his behaviors and the paranoia he was expressing. He could have been pushing them away. Thanks for the thought, I should leave more room for doubt towards his friends.

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Hi thank you for sharing here,

It’s a really hard position you’re in not knowing whether to reach out or not right now,
As someone who has a sibling with schizoaffective disorder I will say I have seen times in the past where somebody could pop up in his life that he knows and it can play into a delusion that he’s currently having. If that makes sense.

I’m not sure if you’re able to join like a nami support group Nami.org or they also have some on Heypeers.com for caregivers of schizophrenics possibly reading more here or being in one of these groups might help you make a decision as to whether you want to reach out for him at this point.

I think it’s good that you have come to the conclusion that you may not have the same relationship but that you would still be there for him it’s one of the nami core principles

That we can try to accept our person where they are and separate the illness from the person. Even if you can’t make it to a meeting using the nami principles may help you as an outline for your relationship with this person.

Wishing you strength during this time

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Thanks for the response. You make a good point there - me interferring might trigger something. Kind of like a self-fulfilling prophecy, I guess. I’ll wait for him then. I do have a question… is there any timeframe where total silence might mean something is actually happening? One thing I forgot to add is that he does not live at a fixed place… i.e. he spends some days at his parents’, some others at his grandma’s, and so and so… so his caretakers might not always be aware of something happening at a given time. I’ve asked him about this before and he never gave me an answer, hence my hesitation.

It was hard for me to come to that conclusion I must admit, but if it is any help for him I believe it’s worth it.

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Update: Hello all;

thanks for your detailed responses. They’ve helped me a lot in knowing what to do in cases like these.

He reached out to me today. Which was surprising. He replied to an old audio I sent him about the status quo of things. He seemed quite preoccupied about me(?) something he hadn’t expressed in quite some time. I managed to get a couple answers: turns out he was never directly told of his diagnosis, he overheard his parents talking about it. They don’t know he knows, which is both interesting and concerning to me. He also told me that during his last evaluation his attending ordered a lowering of the dosage of the antipsychotic for the near future. I have read a couple posts here about lowering the dosage and a relapse I think, and that worries me deeply, especially knowing he won’t be seeing his treating physician in a while (he lives a long way from the clinic). While I am relieved knowing he seems OK, I wonder whether that last point he told me about should be a cause of concern.

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This is likely more common than many caregivers believe. Psychiatrists seem lighting-focused on medications and symptoms and rarely communicate with patients on much else. Psychologists avoid the subject for different reasons. My theories were they were avoiding agitation and argument, or playing into delusions or playing a wait-and-see game as diagnosis isn’t always exact or cut-and-dried. Patient’s mostly don’t want to hear it, or aren’t ready to hear it, so why bring it up. Likewise, caregivers (especially inexperienced ones) seem overly focused on diagnosis and labeling, because they hope to “fix it” and/or want to know what they need to prepare for or expect, ie. prognosis.

The only time I was literally handed a diagnosis was just before I was released from my first and only hospitalization. Seemed like a legal/paperwork thing, because I was initially held for evaluation, but chose voluntary admission at my hearing. The psychiatrist didn’t even say the word, just handed me a paper and we discussed it. Beyond that, I’ve always been the one to bring up the subject of diagnosis in all settings. As far as I can tell this is the norm. The dialog with the health care provider is mostly, “what’s troubling you?”, “oh, let’s try/adjust medication(s) and I’ll see you later.” Rinse and repeat. That’s it.

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I wish I had known this in the beginning.

When we landed at NAMI’s Family to Family, our son had a paper diagnosis of “major depressive disorder” from a work ordered doctor visit, he told us that his actual issue was “social anxiety” and we had no idea what was going on. As MB writes, the parents there were focused on labels and diagnoses.

I wish I had understood from the beginning that the way forward was most likely to be found by widening our perspective to broader possibilities.

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No one ever explicitly told my friend, either. He seemed puzzled and frankly terrified of what certain reports might reveal, so he had avoided looking at them. He recalled being pressured to go to psych appointments every few years in order to renew what he called his “lunatic license” so he could stay on his parents’ health insurance as an adult. He said he suspected at various times that he might have OCD, generalized anxiety, depression, or even some kind of congenital skull deformation. He also alluded to but never pronounced “The “S” Word,” which he avoided due to stigma. Assuming it was pretty clear that he had schizophrenia, perhaps knowing definitively earlier on could have spared him fearful speculation that only seemed to fuel his anxieties.

On a related subject: he also said he stopped going to regular therapy because, after losing one therapist he knew and trusted due to a move, none of the subsequent therapists ever seemed to be interested in him or asked how he was doing or feeling. Or asked him his opinion of his own mental health. Obviously someone in full-blown psychosis needs to be stabilized as soon as possible, but going beyond that: I get the feeling that therapy needs to better acknowledge and respect the lived experiences and emotions of patients and be more curious about them as people, not just as patients. That is one way to build trust.

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I was diagnosed by a psychiatrist who saw me once in 1980 while I was living in Soteria House, a famous group home for schizophrenics. We never discussed the diagnosis and I never saw him again. I don’t remember if I considered myself a schizophrenic, I remember a few years later in 1984 I was out of the hospital and living in another group home and seeing a private psychiatrist and he showed me my medical chart and I remember it said “Paranoid schizophrenia”. I remember I was really surprised, it finally made it official. No one had ever told me before in all those intervening years that I had paranoid schizophrenia.

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That seems reasonable. Not that I knew him to be violent, but he is a rather strong person - and I guess they did not want to agitate him.

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That worries me also. Now that my friend has ‘vanished’ again, I do often wonder how he handles conversation with his therapists (if he is still seeing them that it). He has expressed in the past that I am ‘the only one he trusts’ and I know for a fact he rarely speaks to me, so… I wonder how he behaves in a session… and whether that has influenced the course of his treatment….

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I bring this point forward again; I’d like to know what y’all think of this. Should it be a cause of concern?

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There’s quite a difference in my mind between lowering dosages and ceasing them altogether. I feel the difference is both psychological and pharmaceutical. When you take a medication every day, the psychology is I’m taking this because I need it, or at least others think I need it, and your mindset (at least initially) is to watch for changes. Pharmaceutically medications have levels of effectiveness which vary from person to person and recommended dosages are just averages and in my opinion fairly rough averages. They also have half-lives that vary, so if you miss a dose or two, or change to a lower dose levels don’t change immediately. These vary from medication to medication, but some have half-lives that are measured in weeks.

And in my experience, the return of delusional or psychotic symptoms from a state of stability is (at least internally) more gradual than caregivers might think. Symptoms for me emerge from cumulative environmental and internal stressors, and I’ve developed ways of regulating these outside of medication, because medications are often far from perfect. When these break down, and you have a mindset that maybe the medication you’re taking might have helped in the past at a higher dosage, then you can always take more until you get the opportunity to visit a doctor. Doctors will often call-in increases in dosages or extra medication to pharmacies between appointments as well.

Everyone’s different, but I’ve mostly been more resistant to changes in medication than my psychiatrists. If they don’t experiment, they can’t optimize a dosage or find a medication that’s more effective. Sometimes they’ll discuss a possible change and change their mind a few sessions later, so I wouldn’t get too worked up about something that hasn’t happened yet. I’ve had a couple who talked about “drug holidays” back in the typical neuroleptic days when tardive dyskinesia was more of a concern but they never followed through. As a patient, you get the idea that they might be thinking-out-loud about whatever paper or conference they might have read or attended and maybe testing to see how patients might react– hard to say. They rarely “show their work” and in my experience it can seem a bit more like alchemy or artistry than science to anyone else.

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