Tag Archives: bipolar

Redefining family

January 8th, 2017

It’s been hard having to deal with a diagnosed mental health challenge for most of my life. Every day I have to be aware of where my emotions are heading, how low is “too low” and the difference between seriously wanting to die and just having a really bad day.  I have to have the recognition that, at least right now, one of the major reasons for my prolonged stability is taking the right combination of psychiatric medications consistently every day.  Having to deal with all of that, and adding a clear lack of family support on top of it, made my journey to my now-almost-four-years of stability a much harder place to get to.

Growing up in a big family, a relatively happy person in a relatively safe small town, family was important to me. Being adopted, I already knew family didn’t have to be blood-related, but as far as I was concerned being part of a family, even an adoptive one, meant that we all looked out for each other. And that even if we had challenges or conflicts, that family was family and you never turned your back on them.

That all changed when I hit an all-time low in my mental health journey when I was 19. I’d been hospitalized off and on about six times before that over a three year period, but I was always able to change a medication, continue therapy, and get back to my life in the community. That year, though, I was hospitalized 13 times, had been admitted to and decided to quit my partial-hospital program twice, and had switched therapists multiple times. On top of all of that, all of a sudden, the little emotional support from my family that I had been receiving was taken away.

I was in the lowest emotional spot I’d been in my life, and now even my family couldn’t stand being around me anymore. In this particular circumstance, I was told by my parent during an inpatient hospitalization, during a three minute phone call, that I would not be welcome to come back home after I got out, leaving me effectively homeless. This one phone call extended that admission for over a month due to my increased suicidality and hopelessness.

Four years later, I have learned some valuable lessons about family through the few rough years that followed that phone call. I’ve learned that family is however you want to define it, and whomever you want to include in that definition. It doesn’t have to be blood-related, or a legal bond, like adoption. It can be whomever you feel is your family.

For me, I now have a self-made family that is my most important support system. It’s made up of close friends from all walks of life who I have chosen to become my family. They’re the adult supporters who cheered me on when I became homeless and supported my decisions in my mental healthy journey. They knew that I was capable of more and stood by my side to help me achieve it. They’re former clinicians who went above and beyond their job descriptions and to this day maintain a connection with me. And they are peers from all walks of life and age groups who sat by my side and heard my lamentations and knew where I was coming from because they’ve experienced challenges too. Peers who would validate my situation, but also wouldn’t let me drown in the despair because they knew all too well the dangers of dwelling too long in the deep end.

I think one of the hardest lessons I’ve had to learn for my own mental well-being is the recognition that even if people are supposed to be family, it is unrealistic to expect support when  that person is not capable of being that supportive person for you. And for me, in my individual journey, that recognition also meant forgiving those people for past hurts, and not holding on to those negative feelings within myself and letting it taint my interactions with them today.

Because for me personally, if I’m still letting those past hurts inform my present, then I’m still being held back from being the best version of myself that I can be. And me not becoming the best version of myself isn’t something I’m willing to risk.

Dani is a 24 year old college student and mental health advocate living with bipolar disorder.  She enjoys writing poetry and singing, as well as being the proud parent of 2 adorable felines.

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But you don’t act like you’re [insert mental health diagnosis here]

November 29th, 2015

Girl 1I have bipolar disorder. After years of struggling to find an appropriate diagnosis, years of misleading, suggested and “not otherwise specified” attempts to pin down what was “wrong” with me, I finally feel satisfied with the diagnosis I’ve been given. This is, of course, after an odyssey of inpatient psychiatric hospitalizations and a couple of times at residential treatment centers, which spanned almost a decade of locked treatment in my 23 years of life. That doesn’t even include the time spent in therapy.

I have been out of psychiatric facilities for over two years now, after years of truly believing that my future was forever destined to either be called “crazy” and locked up, or take a path that would lead to my eventual, self-induced demise. I was absolutely convinced that I was an awful person who deserved that bad hand that I’d been given, and that I was better off dead than living as a burden to my friends and family.

The other day, I shared my new diagnosis with a close friend, and their response was one of complete surprise and misunderstanding. “But you don’t act like you’re bipolar,” they said. I blew it off as something they said out of a lack of knowledge or understanding about mental health. But then I realized that that’s exactly the problem. Too many people dismiss people with serious mental health needs as being too “normal” or their symptoms as not being “severe enough” to need treatment. When they most need the support they are apparently not to be taken seriously.

How exactly is someone with bipolar disorder, depression, schizophrenia, anxiety, PTSD, you name it, supposed to act? Because I believe that that’s part of the problem, the belief that people with mental health needs have noticeable traits that set them apart from the rest of society. That you can pick out the “crazy” people from the crowd and somehow “protect” yourself or your family from their “dangerous” influence, as the media would have us believe. And it’s this negative misconception that leads people who need treatment, often times for their own safety, to not seek it out, to be afraid of what the people they love might think.

Well, let me reveal something to you. Mental health struggles can happen to anyone, at any point in their lives. That’s right, I said anyone. So it could be your kid’s kindergarten teacher who’s bipolar but manages well enough with the right medications and her weekly therapy sessions. It could be the employee in the office who makes everyone else laugh because bringing people joy helps keep his depression in check. And it could be you, someday. The thing that all three of those examples have in common is that all those people would be categorized in the “normal” category. They don’t “look’ “sick”…but they are.

So I guess what I’m trying to say, is that if someone confides in you about their mental health status, support them. Don’t discount their experience or not validate them because you’re only seeing the good days. And, as a whole, we need to stop thinking (consciously or unconsciously) that mental health is this scary, dangerous thing that should be feared and will *hopefully* never happen to us. But believing that, and acting accordingly, reinforces the stigma that so many of us who receive treatment experience. And wants to contribute to that?

Our guest blogger is Dani Walsh.  Dani is a 23 year old college student and mental health advocate living with bipolar disorder.  She enjoys writing poetry and singing

 

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Where did the bipolar go?

June 11th, 2012

When she was four years old, my daughter received a diagnosis of mood disorder, and when she was six, a new psychiatrist diagnosed her with bipolar disorder. I will never know whether she received this diagnosis because I took her to a particular clinic at a leading medical center, or whether her constellation of symptoms truly fit that diagnosis.  The psychiatrist who gave her the bipolar diagnosis has been criticized in the media for over diagnosing children with bipolar disorder. A recent story in the Boston Globe describes the ongoing dispute within the medical field over whether chronic irritability and aggression symptoms of ‘mania’ or are better described in the upcoming DSM V as ‘disruptive mood disregulation.’ 

Children who are diagnosed with bipolar disorder often receive other diagnoses, including ADHD, oppositional defiant disorder, post-traumatic stress disorder, attachment disorder, executive function disorder, sensory integration disorder, and autism spectrum disorder. By the time my child was six years old, she had been hospitalized at least twice and diagnosed with all of the disorders listed above, and probably more.

For many years, I was convinced that her prognosis was very poor. In bimonthly meetings at the psychiatrist’s office, I learned that the early onset of my child’s extreme aggression, combined with the frequency of outbursts, pointed to a stronger likelihood that her illness would develop into adult bipolar disorder, as compared with children who had later onset or more mild symptoms. The few people whom I knew with adult bipolar disorder were unable to work and seemed quite disabled. When I argued that my child seemed neither ‘depressed’ nor ‘manic’, I was told that I was incorrect and that irritability was the hallmark of mania (and depression).

Since she was three, I have investigated and tried many interventions to address my child’s tantrums, aggression, social deficits, and hyperactivity, including sticker charts, Collaborative Problem Solving, multiple psychiatrists, therapists, and hospitalizations, at least 15 or 20 medications, two therapeutic schools, social skills groups, occupational and speech therapy, and more. Despite all of this, she attacked me many times, physically and emotionally, and was aggressive in public. Needless to say, she didn’t have any friends.

Nine months ago, the psychiatrist at a long -term psychiatric treatment program told me that I have to accept that my child ‘will never become a doctor or a lawyer’ because her illness is too severe.  This is a child who has expressed the desire to become a medical researcher.  I was outraged at the psychiatrist’s arrogance and I hope that she has a short career.

Fortunately for my daughter, she has a mother who never gives up.  During the Persian Gulf War (1990-1991), while living in Jerusalem, I learned to persevere in the face of uncertainty about the future. Despite the constant risk of biochemical warfare from a Iraqi missiles people went to work and carried on life as usual, carrying gas masks everywhere.  I learned to push aside the fear and the doubt and keep on trying.

After receiving the unwelcome prediction, 9 months ago, I decided that radical action was needed.  I discontinued the services that were not working or were making my child worse: the therapeutic day school and overnight camps, speech and occupational therapies and the antipsychotic medications.  I listened to my child when she said that she wasn’t being challenged at school, she didn’t need speech and OT, and she wanted ‘normal’ classmates. For an interim period, after withdrawing her from the therapeutic school, we tested the waters of reentry into the world of the non-mentally ill.  I home-schooled her and she gradually joined groups of home schoolers, then girls her age within our religious community. With each new group experience that she tried, I kept my cellphone close, in case her inappropriate behavior resurfaced. To my surprise, and joy, she made friends and discovered that her social skills not as inadequate as we had thought.

My daughter’s bipolar disorder seems to be gone. She is thriving at a private school, not special education. She is achieving high grades and is making friends.  Sometimes the experts are wrong.

Our guest blogger, Rachael Wurtman, is in private practice as an Mental Health and Autism Spectrum Advocate, who advises parents about and advocates for  interventions and services, at schools and in the community. She finds pediatric mental illness and autism spectrum disorder fascinating and is constantly learning as much as she can. She is trained in law and in child development and has chosen to give up the practice of law.

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Bipolar no more?

March 29th, 2010

The new DSM 5, the bible for psychiatric disorders, intends to do away with a bipolar diagnosis for many children and teens.  A new diagnostic category, temper dysregulation disorder (TDD) is being proposed and would include symptoms of bipolar disorder.  The new diagnosis of TDD (does this really denote a serious medical condition?) will surprise and dismay many parents.  Families usually struggle for years with their child’s unpredictable behavior, intense moods and volcanic temper tantrums while strangers, friends and family assume that what is wrong is inadequate parenting.   A bipolar diagnosis has helped many parents get treatment, school services and a recognition that what they are dealing with at home is serious stuff indeed.

The DSM is many things to many people.  Mental health clinicians rely on it to help form an accurate diagnosis.  Insurers use it to authorize payment for medically necessary treatment.  Schools often cite diagnoses in the student’s education plan.  Even juvenile courts use it to better understand the behaviors that might bring a youth into court. 

The DSM 5 Child and Adolescent Disorders Workgroup has listed several reasons for the recommended change.  The rise in prescribing psychotropic medications for children is one.  The group also cites a study that “found a 40-fold increase between 1994 and 2003 in the number of outpatient pediatric psychiatry visits associated with the diagnosis of BD [bipolar disorder].”   Yet, a 2007 study found that youth released from the hospital with a primary diagnosis of bipolar amounted to less than one in a thousand.

But in 1994, practically no children were diagnosed with bipolar disorder, so any increase from “almost nothing” would be startling.  In the early 90s, I was running support groups where parents would share stories with each other about their child’s moods (from rage to extreme silliness to wanting to die), the nightmares that came almost every night, the rigid food preferences and risky behaviors.  Most parents worked, had little support and felt overwhelmed by the impact on their family.  Parents were told their children had ADHD, anti-social personalities, were oppositional or had conduct disorder.  Somehow these diagnoses didn’t capture the gravity or complexity of the situation.

The DSM is not a coding system set up for the convenience of the insurance industry or to create a shorthand for schools. Yet, a child must often be labeled “something” in order to get services.  We all give lip service to measuring the “functioning” of a child but that still doesn’t open doors or get services paid for.  The reality is that parents often have to fight for services.  We may decry the need for labels and powerful diagnoses, but at this point in time it’s what we have.  Those diagnoses have to increase access for children as well as describe their symptoms.

Most of the children and youth who now have a bipolar disorder diagnosis require medication, therapy, special education strategies and a loving, dedicated parent who is willing to do battle to obtain the needed treatments and services in order to improve things.  It’s a diagnosis that does not imply that “bad” parenting is the cause, which allows parents to be partners in creating and carrying out a treatment plan, just as they would if this were any other medical illness.   It also does not imply the child is to blame, which is often equally important.

Any new diagnosis proposed by the DSM 5 needs to send a clear signal to insurers, schools and the general public that bipolar in children is very real and very serious.  Parents already know this.  There is still time for comments at  www.dsm5.org until April 20, 2010. 

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Yes, there’s been a gap between the last post and this one.  I got a house ready to be sold, sold it and am getting ready to move.  It certainly devoured a lot of my time.  But I have been thinking about children’s mental health a great deal and the posts will keep on coming!

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Yolanda and her law

January 27th, 2010

If Yolanda were alive today she would be wowing us all.  She was articulate, engaging, moving, smart and courageous.  And she, like many other young people, battled an illness that can bring formidable challenges. There are many other young people who are coping, just as she was, with a terrible struggle within them.  And alongside each one of them are the people who know and love them.

Yolanda died 2 years ago today.  In an impulse no one still quite understands, she committed suicide one January night.  Her battle with bipolar illness was over.  If she were still here, she would now be 18, once an age of increased privileges.  Today, many of those privileges come earlier or later, but it is still a milestone year.

Yolanda left a legacy.  In May 2007, she went before the Massachusetts legislature and spoke about her struggles with bipolar disorder, the system that often didn’t meet her needs and her own desire to make a difference.  She knew that the system that provided mental health services to children and teens needed some changes and she made sure she was part of seeing those changes begin.

Now, it’s pretty scary to go before legislative committees and talk to them. And this was a large hearing in a huge auditorium.  Yolanda had to sit and speak to a committee sitting raised above her with 300 people listening behind her.  It took courage, poise and determination.  It’s unusual for legislative committees to hear from teens.  They hear from heads of companies and advocates like me and they certainly hear from lobbyists.  So they paid attention to every word she spoke that day.  I later talked to members of that committee and they remembered her verve and poise.

On that day, and probably many other days, Yolanda was an advocate.  I looked up the definition of advocate and the dictionary definition is, “to speak or write in favor of; support or urge by argument; or to recommend publicly.”  Because of her amazing qualities, the bill she testified for became known as Yolanda’s Law and was passed by the legislature in one session, a remarkable feat.

Even though Yolanda’s influence lives on through “her” law,  her presence is felt strongly in other ways.  Her mother, Maryann Tufts, says that Yolanda “speaks to me often in amazing ways. Through every kid I see who is struggling to get through their day, to make friends, to feel better, to fit in.  We miss her so much, but know that she is still so present in every way.”

Yolanda touched many lives. She was a remarkable young woman.  She was loved by her family, her friends and touched so many lives.   If love alone could have kept Yolanda here,  she would have lived to be a hundred years old.

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