Mental Illness and Choosing Isolation

There is a question of whether it is healthy for mentally ill people to isolate themselves by their own choice.

My son was diagnosed with Asperger’s syndrome (a type of autism) years before he became ill with schizoaffective disorder. He has always liked his privacy, and he has always spent hours at a time in his room.

solitary man in desert

photo by loufi

After he had his major breakdown last year, he went to live in a personal care home. It has come up twice in the past five months from the people that take care of my son, that his preference for being alone in his room is not healthy, i.e. it gives him nothing to do but listen to the voices for one thing. At one point we were pressured to put him in an adult day program with rather disastrous results. (This story will come in a later post.)

I am now enrolled in a class offered by NAMI called the Family-to-Family program. Like a breath of fresh air, I found support and explanation for my son’s desire for solitude. In short, the class taught that the three predictable features of a person in the post-psychotic stage of mental illness are exhaustion, depression, and delayed stabilization. People in this phase are in need of rest and recuperation because they have undergone major trauma and stress, physically, mentally and emotionally. One evidence of trauma I believe in my son’s case is that he lost thirty pounds with no conscious effort. He has not been in any condition to plan and execute a program of any type, even for weight loss, for months.

Here I have been trying to go to the “experts” about what to do to help my son… the people in charge of the programs. Now I find out that they do not really know what they are about.

I quote from NAMI materials (page 4.37):

This extended period of vulnerability routinely goes unrecognized by professionals as well as families. Although many professionals may now agree that biology causes the illness, they often assume that recovery is solely a function of ‘psychological will.’ Consequently many programs involve ambitious psychosocial treatments and full-day scheduled activities during the early recovery period when the individual is least able to participate.

This vulnerability period may last from months to years. Stress can cause additional relapses. The demand that he be around other people does not serve his need to heal, but I believe serves the needs of those who watch him to be able to actually see him… even when their solicitousness is probably doing him harm.

Understanding is coming very slowly to me.

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6 Comments on “Mental Illness and Choosing Isolation”

  1. Mental Hero » Blog Archive » The Failings of Day Programs for Mentally Ill Says:

    […] has any benefits for a person like my son, coming off a serious psychotic episode, and probably needing rest and a low stress environment more than anything, as I have since […]

  2. Rob Wilkens Says:

    It’s also been suggested (by someone on-line observing my behavior) that aspergers is “also” an issue for me, though at my age I guess it might seem odd (I’m 33), I also was a very much ‘keep to myself’ kind of person, and as we speak I am alone in my room (as you mentioned your son has done). Isolation is very important for me, it keeps me ‘safe’. Emotionally, I hurt inside, and it would kill me to deal with it in front of others. I have to shut myself in.

    If you don’t remember you may have seen me in the past mention that schizoaffective is schizophrenia which has spilled over to also be a mood disorder (depression or manic periods) — and the greek word schiz is broken and phrenos is heart, so schizophrenia means there is a broken heart behind it. In my case, it was just a childhood friend that moved out of town around age 10, after I had known them as (from what I remember) a close friend (did lots of activities together) for about 3-4 years before that. Long story, but our paths crossed later in life for a few years (and by that, I mean no relationship or friendship, literally crossed paths) and that just made it worse, and I’ve been dealing with it silently behind the scenes for years.

    Standard Disclaimer: I am not looking to find that person or get them back into my life. I am almost in love with my pain more than I could ever be in love with the real person. I crave my emotional hurting. Still, I’ve gone at least 20 years mostly unloved (the love of parents/family-raised-in does not count). This has led to the illness, complete with hallucinations and delusions. I wrote about a song from Jewel on my site today which talked about this in a 2 line excerpt from the song.

  3. Hero Says:

    I don’t think age is an issue with Asperger’s. Once you have it, you always have it. Maybe I should write a post about it sometime. I have been procrastinating getting to the next part of my son’s story, involving another hospitalization, this time by involuntary commital. The telling will be very painful to me.

    Thank you for your insights into schizophrenia and the “romantic” connection, shall we say? It is one of those poignantly bitter things to hear my son say recently that he hopes to be married and have a family someday. I try not to say anything pessimistic about it in his presence, but I just can’t see it happening. He is a young man who has never had a date or even a friend who is a girl. Not even many friends who are guys, either.

    I popped over to your new blog, and I see you have said that you have deleted all your posts. I am cheering for you that your health will improve, and not knowing your religious leanings, I hope you will not be offended when I say that I am also praying for you.

  4. Rob Wilkens Says:

    I probably match your sons ‘profile’ somewhat.. Never really dated, and when I did meet a female friend in the hospital, kept my distance in terms of not even letting it become a ‘close’ relationship. I was uncomfortable when every time me met up at the end of the day she’d ask for a ‘hug’, though often would comply.

    I have few friends, except for one whom has known me since middle school and I saw late last week (thursday night), I rarely meet up with them.

    It’s never been a fantasy of mine to be married, and often I see married people who are unhappy with the reality of marriage and am glad I am not (one small example – the above mentioned friend, who now has 3 kids, and was getting ready to get divorced before finding out he had a third child on the way). Raising a family isn’t my thing.

    My ‘broken heart’ issues date back to 1985, and I did work with the same person for 4-5 years later and life and didn’t feel anything towards them (well, it’s funny, during summer and winter, I am not emotional, it was during fall and spring that then I felt things — and that’s when i was at school away from summer job and them that I felt that — and it’s now still again fall and spring that I feel mentally ‘unwell’ including feelings towards them, and summer and winter again I usually feel fine and healthy/normal.)

    I don’t think the seasonal patterns (fall/spring being ‘bad’ seasons emotionally) are 100% tied to the disorder. Also, when I lived down in florida ( I think you’re in georgia which is near there ) the bad seasons for me were different. It’s basically the time of year when the weather changes the quickest.

    Outside of the transition to warm/cold weather (and/or length of day changes) between seasons, the only other thing that has trigerred me is job changes or moving.


  5. Rob Wilkens Says:

    BTW, I think it’s more of a “popular culture” understanding of mental illness than it is a “romantic” one. For example, from one of the better known music artists, Jewel, there is a song Goodbye alice in Wonderland, which has a line I’m trying to write from memory below:

    “Yes, a heart can hallucinate,
    if it is completely starved for love.
    It can even turn monsters
    into angels from above.”

    That’s a very real view of my experience of schizophrenia.
    1. My heart is terribly starved, it sounds like your sons heart is too from what you say of his desires for marriage
    2. Hallucinations are functions of the heart, as written in the song, and yes, another prominent feature of schizophrenia.
    3. Turning ‘monsters into angels from above’ is what a police officer who brought me into the hospital 3-4 weeks ago told me was what was happening to me when I was believing I was getting certain types of advice, guidance and direction ‘from god’ (or his messengers.) The officer said those are probably demons. The officer said: “God wouldn’t say that. God does punish when you do wrong, but he forgives in the end.”

  6. Hero Says:

    You are profound, as usual, Rob. Thank you for your comments.