June 2013 - Colorado Recovery

“What About Those Siblings?”

An often overlooked demographic, siblings of people affected by mental illness, are typically the longest living relatives, and potential caregivers or pillars of support for people with serious mental illness, as well as other disabilities. Despite this fact, and due to varying factors, this population is the least likely to receive support, education, assistance, or even a forum to openly discuss their concerns, worries, questions. Change is occurring, but all too slowly.

Many years ago, even parents were not provided adequate support for their children’s diagnoses. That has certainly evolved. There are many parents’ groups now and educational resources in print as well as online. It is immediately recognized these days that when a child is diagnosed with any type of disability, it involves the family, and providers march into action to address concerns with the parents. The siblings, however? Very seldom, even now in 2013, are the siblings’ needs thought of, mentioned, addressed. This is changing. Slowly. Very slowly.

As a person who was a sibling to a brother with a significant disability, I always knew something was missing in terms of support. I worried. I wondered. I worried and wondered silently. My parents did the best they knew how to do, and actually did it quite well. Most of their time was, of course, spent caring for my brother. Rightly so, and I wouldn’t have had it any other way. We sisters knew to not add to their distress by asking too many questions, adding to their tensions by letting them know of our concerns. There were times I was too embarrassed to have friends to my house after school because his behavior was odd. I did not understand. I felt tremendous guilt for feeling that way. I said nothing about any of it. There was absolutely no one who I could talk to. Who would’ve understood? As I look back I realize there were probably friends at school who had siblings with a disability, and maybe I could have spoken with them, but how would I have known who those students were? It sure would have been nice to connect with them – with someone.

One of the reasons that siblings have not been well included in the conversations over the years is simply that parents were/are trying to protect the sibs. They often feel it is their burden and do not want to share that with the sibs. Parents are intrinsically assigned to protect their children, after all. The intention is truly good. Another factor is that they just do not know how much to say, exactly what to say and not say, and are often thrown off by various ages of the kids and who should be told what!

The good news: A huge percentage of siblings of people with special needs grow up to be amazingly empathetic people themselves, are less likely to bully or tolerate bullying, and often mature into contributing via their careers in the helping professions. It is good to remember that there are joys as well as concerns that result from being a sib.

I plan to write blogs pertaining to the following specific topics: current available supports, one on nothing but the joys, one about shared concerns regarding who is to help out after the parents die, typical traits and common concerns of the sibs, one on statistics, one for the parents on best ways to communicate with the sibs, and so forth. With opens ears and arms I welcome your suggestions. SIBLINGS – what do you want to talk about?

In closing this initial sib-focused blog, I just want to say that as a mental health nurse working with people dealing with all sorts of illness and disability for my entire career, the siblings and I have always resonated, and my brother’s biggest gift to me was the compassion, empathy, and connection that was instilled in me to share with you. You are not alone. I hope you find the solace and sense of understanding, even belonging, that is here for you.

Lisa Croce, RN, BSN

www.rockymountainsibshops.com

To post a response to this blog please visit The Recovery Trust.

The Recovery Trust, a Colorado-based nonprofit, has added a new resource for families in need of education and support. It is a free, secure, online forum through which family members can join with others in the same situation.

The forum is moderated by a team of mental health professionals, psychiatrists, family members and people who have experienced mental illness, all of whom have received extensive training in their role as facilitators. Users of the forum can access a large database of information about these illnesses, FAQs and links to other resources.

Words matter: How should we talk about mental illness?

“So, I am thinking about how to talk about my….well….my, you know, my mental illness. I mean, my brain disorder. Well, I don’t know how to describe what it is.”

Words do matter and how we talk about what we experience is important. It may be that through the years a person’s symptoms have led to a diagnosis, one that is listed in the DSM-IV. When that becomes clearer, or clear enough, there are ways for these symptoms to be treated, usually by a combination of medications and programs. The major “s” listed by the National Alliance on Mental Illness are schizoaffective disorder, autism spectrum disorders, obsessive-compulsive disorder, panic and anxiety disorders, and borderline personality disorder.

One of the lively conversations today is around how to talk about these illnesses. “Mental Illness is an illness like any other” is a phrase we have heard. However, that does underestimate the way that most illnesses can be determined. Diabetes or cancer or heart disease are measurable, based on biological data. “Mental” illnesses are not yet in that category. We go on symptoms, as mentioned above, and we don’t have a brain scan at this time to indicate why these symptoms occur. While treatable, the causes of mental illnesses are not completely known.

Still, there are many who say that mental illnesses are physical disabilities. They are biologically based and arise in some way from the brain. Therefore, we use the medical model of treatment. “Here are the medications to try in order to alleviate the ‘illness.’” This understanding has at least one enormous benefit. It may reduce the stigma that is present around “mental illness.” What has been known as “mental” illnesses can now be called “brain disorders.” It sounds less stigmatizing, removes the burdens of blame for what causes these symptoms, and can empower those who are living with the shadow of self-recrimination to speak and act more openly in society. Living into that reality, however, still leaves more work to be done. Some people think the word “disorder” is too clinical and medical.

For instance, when I mentioned that I had been using the words “brain disorder” to describe my son’s mental illness, bipolar disorder, it was very clear to him that this is was not the way that he wanted me to talk about this part of his condition. He said just use “bipolar.” I sincerely apologized because I had not asked him before, and I felt that I had used words that were inappropriate. He is an adult who is fully alive, filled with honed wisdom, has a creative wit, and I deeply love him. He was direct in pointing out that I had erred in his case.

Language can be tricky. It can elucidate things or muddy things. So what can we do? Keep on keeping on working on language seeking to describe how things are. It will not be perfect since someone will always come up with an “on the other hand” perspective on what you are seeking to make general and universal. Now I have come to understand even better from my son that perhaps the best thing is to talk with the person who is affected by a “mental illness” or a “brain disorder” or “depression” or “bipolar” or whatever to see how they see it themselves. This is all about relationships anyway. Connecting with someone who is affected by mental illness/brain disorder/etc. may reveal something new and fresh in our own understanding and therefore lessen our perplexity and confusion about our use of language.

Alan Johnson,

Interfaith Network on Mental Illness and Caring Clergy Project

To post a response to this blog please visit The Recovery Trust.

The Stigma Inside Us

We grow up surrounded by a cultural myth – the stereotype of the person with mental illness. Our news media and daytime TV shows portray people with mental illness as violent criminals or, at best, figures of fun. Not so long ago, I saw a realtor’s ad in a local newspaper headed “Driven Crazy by Your Housing?” that illustrated the message with a snarling face with bulging eyes, wild hair and distorted features. Community surveys reveal that people think of people with mental illness as always being unable to make any rational decisions, incapable, unpredictable and worthless. A 1960s American survey concludes that they are viewed by the public with “fear, distrust and dislike.” In short, “all things bad.” Since then, there hasn’t been much, if any, improvement.

This stereotype leads on to all kinds of misconceptions about mental illness. Half the people answering a public survey in Britain in the 1990s thought that setting fire to public buildings was a “very likely” consequence of mental illness. American surveys of the same period found that the majority of the public blamed mental illness on “lack of discipline,” and believed that people with mental illness were more responsible for their condition than were people with AIDS or the obese or any other stigmatized group. Worse still, people with mental illness themselves, and their family members share these misconceptions. When I was involved in a global anti-stigma project a few years ago, we conducted a survey of family members in Madrid. It showed that more than half felt that people with schizophrenia should not be allowed to study, drive a car or have children.

So, growing up in a world where everyone accepts this myth and shares these misconceptions, what would your reaction be if someone were to tell you that you suffer from mental illness? If you have an ounce of dignity, it would be, “No, not me. I’m nothing like that.” And, of course, you would be right. No-one is like that. But it may take you a lot of time and effort to get past the stereotype, see the illness for what it is, an illness, and see yourself again for the responsible and capable person you are. Your first impulse would be to say it can’t be true.

I was lucky enough to hear Pete Earley talk in Boulder recently. He is the author of Crazy, an account of what he learned about the US mental health treatment system after his son, Mike, developed a serious mental illness. In a recent blog, he writes about trying to understand why his son didn’t want to take medication for his mental illness. One day, he asked Mike to explain to him, in writing, why this was such a struggle. Mike writes:

Denial was a strong factor in my understanding and even when evidence of my own madness would be presented, my mind would find a way to weave out of the circumstance and an obtuse reasoning would somehow form that would keep my own pride intact. Always two steps ahead of the truth, my brain would tap dance its way into a room where I was not at fault, where it was everybody else versus me, where I was some sort of prophet or special medium who was undergoing visions, not hallucinations, and I was important, not a victim.

It is very hard to understand that one’s own credibility is broken. There is a lot of personal shame one undergoes when they realize that they are no longer in line with society’s understanding of sane. It makes one doubt one’s own instincts and second guess the movements and decisions that one makes. Suddenly, the veil of confidence and ability has been lifted and one is a wreck, struggling to piece together the remnants of what are left of one’s self image.

I learn a lot from my son, Pete Earley concludes. One lesson he has taught me is that taking anti-psychotic medication is much more complicated than being told by your doctor that you have high cholesterol.

Pete Earley is the bestselling author of such books as The Hot House and Crazy. When he is not spending time with his family, he tours the globe advocating for mental health reform.

You can read his entire blog here: Why Won’t You Take Your Mediation

Denial is a major consequence of the stigma of mental illness that we all carry within us, but when denial gives way to acceptance and shame, there’s a lot more trouble in store.

People who accept the label of mental illness take on a burden. They can see themselves as incapable and worthless. Out of a sense of shame they may withdraw socially from their friends, give up on their careers, academic or marriage plans and, viewing themselves as hopeless cases, become dependent on their treatment providers and others in their lives.

Consequently, the person with “insight” into his illness may do less well than expected while those who reject the label of mental illness are more likely to hold on to their ambitions and try to forge ahead with their lives.

We conducted a study a few years ago in Boulder, Colorado, that showed this to be true – that people who accept the label of mental illness and hold stigmatizing beliefs about it tend to feel dis-empowered and worthless and don’t do as well as they might.

There are several other studies now that point to the same problem. Insight coupled with a sense of shame about the diagnosis leads to hopelessness, avoiding social contacts and poor self-esteem. Internalized stigma, it seems, undermines the possibility that insight will lead to recovery.

Mental health professionals have long been trained to help their clients develop insight and to accept their illnesses. It seems, however, that there are two other elements that are vital to recovery that are much less likely to be emphasized in training – empowerment and reducing internalized stigma.

On the road to recovery, people with mental illness need to find the information that will help them shake off the stigma, stereotypes and misconceptions that come with the label of mental illness and to access advocacy to combat discrimination. They need to be treated with the respect that will allow them to retain a sense of dignity and to be provided with opportunities for advancement that will show them that they are masters of their own destiny.