It just sucks to be mentally ill

[SuZir]

Not that it is that fun to be a loved one of a person with mental illness, but of course it is so much worse for person themself.

Ache is still not well, nor talking to us, but we do know more about things that have happened lately. Some parts I'm not comfortable discussing publicly but some are less identifying.

Last weeks have been tough for him. Some better days, lots of bad days and couple spirals out of control, one rather bad one. However it starts to seem that it may be just his old problems acting up instead of onset of something new and extra, which is good. Apparently also some mixed substance abuse 'helped' him to really spiral out of control, though he was clearly delusional and out of it even before he got that bright idea.

But despite that; this is not about bad choices, not doing the right things, not working hard for recovery. Nope. It is just his illness acting up and there is very little he can do about it. And what he can, he has certainly tried his best to do. There was a triggering factor for this, but again, when he starts to talk with us again, there is no way I could look him into an eye and tell him, he should had handled it somehow better or differently.

Okay, if we would want, we could do that. Go on and on how he should have recognize the situation and asked help, but in reality he didn't have much chance of that. Or how do you think it would go, if you would go to your boss and tell that you have no proof, but you feel that this one co-worker doesn't like you and is sabotaging you, when all the evidence suggests that only one screwing up out there is you? Or he could had told a therapist, maybe even did, but that would likely had been taken as paranoid.

And someone so fragile as Ache that kind of tension, being afraid of going to work at morning, always double checking himself and others, not being able to be sure if it was that other person or himself - well, it is a trigger one can not expect him to deal with even the actual 'pranks' were small enough to be 'pranks' if there would had been just one or even five of them. And considering they even lived together couple months before summer break, he couldn't really feel safe at his own home either.

We have talked before with Ache a lot about his issues not being any more odd or special than having a knee problem would be. That too needs treatment, rehab, keeping it in mind in every day choices and that too can reinjure or act up in any time and just because. That his issues are not any more shameful or wrong than bad knee would be. But there is one big difference, when bad knee may end your career and causes you pain and heartache and chronic disability, it doesn't wreck havoc in all areas of your life, like episode of mental illness can do. It is just not his profession and livelihood that are in stake, it is his relationships to people he loves, his reputation, everything.

I have also been thinking my friend who passed away last winter. Her struggle with her illness and how totally unbearable her life turned into. How she lost everything she had hold dear because of he illness. She did make some bad choices, but without walking in her shoes there is no way of knowing if she actually had any real choice at those times. It is easy to say that there is right and wrong and that one does know the difference. But does one? And even if they do, is there the possibility to choose differently?

Or my dad and his Borderline (BPD). It is easy to judge his choices, but did he really have any? Differences between Ache and him are in how deep the damage goes. Ache has healthy parts of personality left. Parts that damage has not touched, I think my dad has not. With all that damage and scarring, does he really have had an opportunity to make choices or have those things I have considered his choices been only options available for him?

Recently also a son of an acquaintance has again been hospitalised after some really nasty situations. He has schizophrenia and really does everything right. Takes his medications despite side effects, tries to live very structured and stress free life. Eat well. But even that is not enough despite how restrictive life style it is. When the illness raises it's head, it does. Nothing can be done.

I start to see that Ache is sharing that same path. His prognosis is little better, especially now that it again seems like this last spiral was not manic psychosis, psychotic depression, reactive psychosis nor onset of schizophrenia, but this is not about his choices or hard work. It just is and there is only so much he can do to it.

And that really sucks.

 

[InsaneCdn]

It just is and there is only so much he can do to it.

And that really sucks.

I hear you. And agree. The only thing worse than being a parent of a kid like Ache is to be Ache.

 

[Scent of Cedar *]

Heartfelt agreement here too, SuZir. Your post will help us see our kids' challenges through their eyes, and with compassion.

Thank you.

Cedar

 

[Tanya M]

We have talked before with Ache a lot about his issues not being any more odd or special than having a knee problem would be. That too needs treatment, rehab, keeping it in mind in every day choices and that too can reinjure or act up in any time and just because. That his issues are not any more shameful or wrong than bad knee would be. But there is one big difference, when bad knee may end your career and causes you pain and heartache and chronic disability, it doesn't wreck havoc in all areas of your life, like episode of mental illness can do. It is just not his profession and livelihood that are in stake, it is his relationships to people he loves, his reputation, everything

I like this, the way you compare it to a physical disability. I so wish our society would not look upon mental illness as something so taboo but instead have more compassion and understanding.

 

[SuZir]

I like this, the way you compare it to a physical disability. I so wish our society would not look upon mental illness as something so taboo but instead have more compassion and understanding.

Isn't it interesting how different attitudes are towards physical and mental illnesses?

When someone has overindulged food and is overweight and gets diabetes, they are of course advised to try to lose weight, but they still get treatment if they are not able to do that. If someone gets addicted because they overindulged substances, they may be denied all health care not only for addiction but other illnesses till they first stop substance abuse.

When someone has cancer and after remission it comes back no one tells them that they didn't try hard enough, don't blame them if they didn't stick with perfect diet and other health habits during remission. When someone with mental illness has a new episode after remission, they get criticised if their health habits were somehow lacking during the remission and people seem to assume that they did it for themselves by doing this or that or not doing this or that.

Also with most illnesses side effects many psychiatric drugs do have would not be scoffed off like they are. And people would not be blamed by not wanting to take medications that have such serious side effects or side effects that so much decrease quality of life.

When some one has bad knee and they do something careless that causes the re-injury it is considered bad luck. When person with mental illness does something careless that causes the illness to have a turn to worse, they get often harshly blamed by their choice or it can be even considered intentional.

 

[BusynMember]

Mental illness, from how NAMI and my psychiatrists have explained it, ARE physiscal disorders of the brains, chemical imbalances. Like everyone who has an "invisible" disorder, mental illness is often wrongly seen as willfully "bad" behavior.

Having spent ten weeks in a psychiatric hospital once and a few short stays in between to adjust medication, I have seen many people who suffer from various degrees and types of mental illnesses. And I know people who have mental illness, know it, and won't go for help or want to fix it on their own.And many more who obviously have big problems in the mental health department, but are ashamed to admit it and deny it. It's hardly worth blaming them, since there is such a stigma attached to it. The stigma stops many from admitting it and getting the available help.

It is a big problem in U.S. society...not sure about other places. There is a stigma that it means you are "crazy" which is a nasty word for psychotic, and most mentally ill people are not psychotic. Because of the stigma and the feeling of some that "they just choose to act like that...they just choose to drop out of society...they just choose not to eat...they are just exaggerating; they can't really believe everyone is out to get them"...there is no good place for somebody with mental illness to heal in the U.S. So many are homeless and use substances to self-medicate. Many mental health facilities treat the mentally ill without dignity. Fortunately, this was not the case for me, but it is out there,a lthough I do hear it is getting a little better.

I am taking a class to become a Peer Specialist. The point of taking it is to learn how to help younger people with mental illness who feel there is no hope. That's my little bit I'm doing to give back to all those people who bothered to reach out and help me when I was at my worst. I only wish there were better resources to work with. The place I'm going to volunteer is a really cool social and therapeutic actual home where people recovering from mental illness hang out. Believe it or not, most do not look or act different. And that's the part that fools outsiders. Talk Hour is the only time you learn somebody's problems or if they confide in you on their own. We need more places like this one.

 

[AppleCori]

My other daughter's biggest fear (the one without bipolar) is her fear of getting a mental illness. She has PTSD from dealing with her twin's illness. She has been with her sister through it all, they have always lived together (and still do, though her sister is getting married next year). But she knows how difficult it is.

Suzir--your son's difficulties with his career sound like my X's. He was brilliant in his field but troubled. It makes it so much more difficult that it should be. It is so hard to know what is 'normal' job stresses and what is attributable to mental health. And normal stresses just exacerbate the mental health issues.

 

[SuZir]

There are some positives signs in attitudes at least around here. For example this year Mad Prides have gotten quite a lot of press and attention in my country in various cities. And when twenty years ago it started to become okay to first talk about burn outs and then depression, it seems that same is going on more and more with bipolar, Borderline (BPD) and schizophrenia right now. For example during last month I have seen tv document, in very popular document series, that featured an upper middle class woman on her thirties and working in nice job, who told about her bipolar 1 and the times she was hospitalised due manic psychosis and about the process of finding right medication combo and lifestyle factors that helped her be able to get back to work. And then there have been two ar5ticles in very mainstream and popular women's magazine that have had long articles about a writer with schizophrenia and singer with Borderline (BPD) and how they manage to live with those illnesses. And earlier this summer in our most popular sports newscasts had a long story about former sprinter and her psychotic depression she battled during and after her career for years.

These type of stories do not present people with mental illness as freaks or problem but someone one could easily identify. Of course it is telling that all the example above are women, in my country it is very common, that some things start to be okay with woman long before and remain taboos with men even a decade or two after (it was same with for example gays, first respectable gay women came publicly out twenty years before gay men who didn't want to be considered freaks started to come out publicly.) Right now it seems, that mentally ill women are socially acceptable and do get compassion but mentally ill men are portrayed as morally corrupt (recent example one very respected journalist, who had onset of bipolar and during mania wrecked his marriage and was promiscuous and tweeted sexual stuff) or downright dangerous.

There has also been a big change in treatment of dual diagnosed people in my country during last twenty years. When my dad was on his worst twenty, thirty years ago, it was all about substance abuse and how nothing else can be treated or even diagnosed before extended sobriety. Between then and now there has apparently been some new studies and standard of care has had a big shift. Now it is clearly stated that treatment of mental illness is the priority and while comorpid substance abuse issue should be treated at the same time and the patient should be offered also motivational interviewing or CBT with provider specialised to also substance abuse, the primary health provider for the mentally ill substance abusers should always be a psychiatrist from mental health clinic. Apparently those studies that showed that 60 % of bipolar substance abusers who were provided with working mood stabilisers achieved remission in their substance abuse in three years and new research how episodes of psychosis do irreparable damage to the brain have changed the treatment approach and made mental health treatment a priority and substance abuse treatment secondary for dual diagnostic patients. And because it would be malpractice and cause disciplinary actions for the doctor and clinic not to follow those guidelines, it seems that now dual diagnostic patients actually do get help in totally different way than when this was an issue with my dad.

When I was going through it with my dad, it always seemed like he was getting treatment only when he was sober and even then it was mostly geared towards substance abuse. When he relapsed, all treatment also to his mental health issues stopped to start again only after he had been some time sober. And often the mental health side was played down and providers were telling that it was just about drugs and alcohol and when he would stay sober for extended time, all the mental health issues would go away. Of course they didn't. And because at the time it also felt that substance abuse treatment was only for those who were not taking drugs or drinking at the time, every time he relapsed, the treatment stopped and he had to start from beginning later. During these twenty years it also seems that substance abuse treatment has changed and it is not sobriety or nothing any more, but they do provide treatment and harm reduction also for those who are not willing or able to remain sober. Treatment doesn't get cut because of relapse or even if the patient decides sobriety is not their goal (for now), so people are not falling off the grid after relapse like it used to be, but instead supervising doctor remains the same and they just use methods and treatments that fit to the patient at their current state.That continuity of treatment is something that has really gotten better during the years.

But with mental health patients it on the other hand seems that patient often has to be active in getting and applying services and good at hopping hoops. And considering that difficulty of taking initiative tends to be common symptom in many mental health problems, that is really counter-productive.

So things are slowly getting better, but it is very slow movement and attitudes of the public are even more behind than professionals.

 

[HeadlightsMom]

SuZir -- Your words are insightful and profound. Sending all best wishes for whatever layers of peace are possible -- for you and for Ache.