Support for people who have recovered from serious mental illnesses

In My Humble Opinion
1

I really don’t know if this is the board to be posting this, but I have been thinking about it lately and wonder if anyone else can relate or has ideas.

I emailed a few local NAMI chapters, but haven’t gotten a response yet. So I have already pursued that avenue.

Anyway, the conventional medical theory is that serious mental illness is chronic and degenerative, and at best can be controlled with medication.

However my own personal experience was that I had a severe illness for a few years, recovered, and went on with life as usual.

It is actually not an invalid theory (recovery), just one that is unpopular. Several studies have found either total remission or improvement among a slight majority of the sick over long periods.

http://www.power2u.org/evidence.html

Personally I wonder what role pharmaceutical companies play in promoting the theory of non-recovery (since if a person cannot ever recover, they can never stop taking meds, even if they are asymptomatic). But that is the attitude I have seen from my limited interactions with people in the mental health field.

Anyway, when you try to talk to people in mental health fields about your illness and recovery you usually get one of 3 responses.

  1. Disbelief that you were ever sick and are making it up because you seem fine now
  2. Belief that you had ‘something else’ since serious mental illness doesn’t get better
  3. Belief that you did get better, but resentment that they did not

And all of this is very alienating. In college I joined a support group for people with schizophrenia, but everyone except me was still sick. I wasn’t having any positive, negative or cognitive symptoms anymore but the other people still were. Add in the subtle jealously I detected from at least one person (because why did I recover and get to go to college when she didn’t and was still sick, etc) and it wasn’t as good as it could be. It was a good experience, but still not exactly what I was looking for.

Are there groups of people who have recovered from mental illnesses but still have the issues of alienation, shame, rejection, with them? When you are mentally ill you can feel pretty ashamed after you recover because of some of the things you did. I am lucky I made it through w/o any kind of criminal record, and only have social rejection to show for it.

I know the generic response will be ‘see a therapist’ as if I’m asking for medical advice (which I’m not) I have seen therapists. Some are good, some aren’t.

My question is are there any support outlets for those of us who have recovered and gone on with our lives? The support I have found is based on the model that people are chronically sick, never recover and can at best be managed. Those of us who recover, go back to college/work and get on with our lives, but are still plagued by feelings of shame, rejection and humiliation from when we were sick really don’t seem to have group outlets within the mental health community to find community.

Or am I looking in the wrong places or not looking hard enough?

Are there meaningful outlets for those of us who recovered and want community with others who can relate? It seems most people either have never been sick, or are still sick. Finding people who have been sick and gotten better is hard.

2

I thought the school of thought about outcomes for Schizophrenia was still 1/3-1/3-1/3 - that is 1/3 of people will have a single episode and then recover and never have another episode, 1/3 will respond well to treatment, but will have additional episodes, and 1/3 will be profoundly sick for the duration of their lives.

Has this changed recently? Or were you talking about other patients who may not be that knowledgeable?

3

There is the anti-psychiatric / mental patients’ liberation type of organizations, which usually consist of people who have been diagnosed but who found the MH system profoundly unhelpful. Some do not and did not ever believe there was anything wrong with themselves, others were actively seeking help and consider the “help” they got to be worse than the original condition.

May not be applicable at all to your situation.

OH, and they don’t call us “recovered”, they call us “in remission”. Like the frothing at the mouth will start back up Any Moment Now. Misdiagnosis is always a possibility but since there’s no objective criteria, no one can effectively demonstrate that they were misdiagnosed and were not / are not actually mentally ill. And if you were, you’d deny it because of course you’d lack insight into your situation.

4

I don’t know if this is what most doctors think, but it’s definitely not the conventional psychological theory. As alice pointed out, schizophrenia is still acknowledged to resolve or improve in 2/3 of patients diagnosed with it. Remission of depression is acknowledged to happen in more than 50% of cases. The same is true of many other mental illnesses. Every psychiatrist and therapist I have ever met has admitted that recovery and/or long-term remission is possible.

I think what you are likely encountering is the fact that the mental health system is set up to focus on the needs of people whose illnesses are severe and ongoing. This is true of the medical system as a whole.

Medicine has a crisis mentality. There is a tendency for doctors to act as though there are only two states of being: in crisis, or well. But if you actually ask psychiatrists, “Do you think it’s possible for a schizophrenic to recover?”, all but the most uninformed know that this is a real and rather common phenomenon.

I think you are also confusing drug company PR, and the hopeless feelings of patients who have not recovered, with what doctors believe and what researchers know about mental illness.

As a person who has bipolar disorder that is well-managed, I too find that there are not a lot of resources for people who have recovered, gone into remission, or had their mental illnesses successfully managed. I suspect the reason these groups do not exist (and they seem not to) is that those of us who have recovered but still feel ashamed, rejected, and alienated tend not to want to be publicly associated with our previous (or now well-treated) diagnoses.

It’s unfortunate, because a lot of us need advice on how to handle issues associated with re-entry into “normal life.”

5

Why wouldn’t it be? It’s fairly anonymous and it’s a permanent record of your conversations. I’ve found it very useful to go back to my (humiliating) posts when I wrecked a few years back. Sure, others probably find me tedious and would say it’s not appropriate to bore them with my tedious & mundane issues. Fukkem. People learn who bugs them around here and can avoid their posts if they want to. This board is part of my real world, they are just part of the board.

Also, in the interest of fighting ignorance held by The Well in addition to those who are not and remain confused because they don’t know they’re not, this is an appropriate place to Share With The Group. I can’t be “out” fully at work or in real life because of prejudices that I fear would affect me and my family in very real ways. I don’t have to fake normal here.

6

That’s interesting. I haven’t had a lot of personal contact with the medical community though, so my example base is fairly limited. However knowing there are tons of professionals and ex-patients out there who know things like this are perfectly normal is interesting.

I do agree most people don’t want the shame associated with them. Severe schizophrenia (as an example) is usually associated with homelessness, crime and severe social dysfunction. Letting people know you had those things or were on the brink of them once isn’t easy to do. Its easier to just try to ‘move on’, but part of you can’t because you try to hold your ill behavior to the same social standards you are using when you are healthy.