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

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

 

Are you the Social Worker? No, I am the mom.

file000527564214I walked into my son’s new residential and sat down to have the “intake” meeting.  A lot was happening.  It’s a new program in a new location and new staff too.  It’s also a program designed for young people moving to adulthood. Alex is 3 months past his 18th birthday and I thought things might be different since he is an adult now.

Everyone had welcoming smiles in a warm room that appeared to be an office-like area.  Many of them asked for things all at once. My son- the new adult- didn’t answer but instead looked at me as they asked. Intake filled out- check! Medication- check! Prescriptions, clothing, PRN notes, bank account- check, check, check.

Then it began to get more detailed.  They start talking: He needs a primary care doctor, a psychiatrist, his own bank account in a bank nearby.  Oh, and he needs to learn public transportation.  To me, it felt like a whirlwind of information and demands all within 5 minutes.  I looked at my son’s face and said, ”Excuse me can we update you on a few things?”

I started by saying, “I have the primary care, psychiatrist and bank account all set.”   Eyes widen and someone immediately says, “Wow, you are the most organized social worker we have ever met.”   I reply calmly, looking at my son in a reassuring way that says: I got this one. That means that I will teach the community on this one.  To the staff I say, “I am not a social worker. I am his mom.”

There is silence and people look around at each other.  The main program person says, “We have never had a parent come to the program. The majority of our young men belong to the Department of Children and Families- not Department of Mental Health.  Are you local? Are you involved? Is he your real son? “

Massachusetts has launched a new approach to residential services funded by both Department of Children and Families and Department of Mental Health called Caring Together.  That means a new way of delivering residential care that can support families by doing two things: Keep families connected, and embrace children with care that they need.  But there needs to be strong standards of how to be family friendly and training on how to accomplish it.

I understood that this was the beginning to our relationship. This residential program had to experience, understand and work with a parent who is involved, connected and has been her son’s case worker.  They needed to accept that this was a parent who knew the details in the files, the appointments, hospitalizations, had the coping skills, and had been involved in the services and education plans for the last 18 years.

We continued with the meeting and then I started with what I thought all parents, or even social workers, would suggest for any child or young adult entering residential.  I said these are the top things that I would want if I were moving into a new program:

 

  1. Tell my son and me how the passes need to be organized so we can continue to be a family.
  2. Tell us how to access public transportation or program transportation to help keep us together.
  3. Teach my child how to have minimal money on a bank card for emergencies
  4. Allow us move all items into the room together.
  5. Let us make the bed, sheets, comforter , pillows, pictures to help make the room look like “his room at home”
  6. Provide snacks/drinks for the first few days until he understands how basics like shopping, meal time are organized.
  7. Help him add numbers to his cellphone of people in the area to ask for support
  8. Direct him to the local library for community maps so that in his new community he knows how to explore it with staff or (when allowed) alone.
  9. Give him a card to open up when I leave to know that I am here and will continue to be. It’s just like if it was college — it takes getting used to and will be different.
  10. Most important make a plan to talk on the phone and in two –three days and visit again to hear and support that it will be okay.

As I walk to the door to leave, I am approached and a conversation begins.  The staff express enthusiasm and excitement and they love that I am part of their community. They also note that they wish that more kids would have parents involved.   I am surprised that it was a very quick shift.  I am the parent and family and they have no idea how to include me, and they are challenged to shift to embrace this and learn.

They need some help with that challenge and here are my top 5 suggestions:

  1. Have paperwork reflecting all agencies funding this project. Include DCF/DMH on all continuum paperwork. It makes a difference.
  2. Ask for community support but ask for FAMILY Support. Ask the young people who they consider to be their family.
  3. Break BREAD together. Offer water, a small bread or crackers during the first meeting to welcome families. Show them a chart with staff roles so they will know who is who!!  Some programs have a role called Advocate – tell families what that is when that’s what they’ve  been for their child.
  4. Invite families to be involved in community celebrations
  5. Read the paperwork on the young adult’s background to see if there is family involvement and embrace it! If there is not…support that young person of any age to set up their room. It is the youth’s choice but I have never seen a youth going to college that doesn’t want someone to help them move in.

For some programs, including families is a big shift.  This culture shift needs to be supported by training, mentoring and most of all standards of what to do for families. The standard of common sense is not specific enough.  There needs to be standards of good family practice, how to be family friendly, and family engagement.  Only then will families feel like the best standards of care are in place.

Parent of child in Caring Together Model (residential services)

Stigma: it’s in the little things

sad womanStigma is about the little things.  The averted look, the space people suddenly give you when your child is behaving oddly or aggressively and the expression that says clearly, “Why don’t you control your child?” It’s those little things that wear you down. They appear so subtly, so fleetingly sometimes, that a strong reaction seems out of place. So we get a little more vigilant, become deliberately less sensitive to the people around us and learn to get through our day.  The little slights sting and sting again, like being punched on the same bruise over and over.

It’s only the big stigma stories that get attention, yet while they are important they happen less frequently.  The little things happen every day.

We all have our stigma stories.  They are like war stories that we tell one another as comrades in arms.  I remember a couple telling me a number of years ago about their 12 year old son.  He was being treated for depression and they put him in parochial school where the class size was smaller.  It worked for a while.  Then the mania, the fixation on death and blood, the impulsiveness and the risk taking rushed in and they began to understand that they were dealing with much more than depression.  He began drawing pictures of his teachers, his friends and family covered in blood or dying.  “We can’t have this,” his school said. “You’ll have to find a new school elsewhere.”  His parents asked me if he had been newly diagnosed with a medical condition, would the school have made the same decision?

We gasp and shake our heads when we hear these stories.  It’s stigma, it’s lack of education, we say.

But it’s the small hurts caused by stigma that are often harder to bear.  For me, it was the time the nurse in the pediatrician’s office read my son’s chart (with multiple medications, diagnoses and hospitalizations listed) and I watched the look in her eyes change.  The way she touched him to take his temperature and blood pressure went from confidence to wariness and when she left the room, she sent someone else in to finish the rest of the visit. It was the look in other parents’ eyes when my son was on a carousel and every time his horse rounded the bend to cruise past me, he yelled, Snot! Barf! and the words got worse and worse.  I stood helplessly there waiting for the ride to end while I endured the looks of pity and contempt.

In a study in 2010, researchers examined stigma focused on children’s mental health and found that there were three targets of stigma.  The first, as we all know, is the child or teen who has the mental health challenge. The second target is the family or caregiver.  Mothers, they noted, perceive more stigma than fathers and parents of children under 12 experienced more stigma by association than those with older children. Unsurprisingly, this increases what researchers call caregiver strain, or the stress of coping with both the child’s mental health issues, the impact on the family and the additional stress of dealing with the reaction of others.  The third target of stigma was mental health services themselves.  This was seen in a variety of ways from communities opposing group homes or clinics locating there to stigma toward mental health providers themselves.

The small, frequent experiences of stigma hurt in several ways.  There is the hurt you feel for your child.  It’s not just for what is on their plate each day – in fact there are days we admire our children and their creativity and strength.  It’s the looks they receive, the slights they experience and the subtle shunning.  Then there’s the more infrequent but still painful experiences that their siblings go through.  The teacher who also taught their brother who says, “Oh, you’re John’s brother.  I see.”  The receptionist at the dentist’s office who gives a fake smile and remarks, “Oh yes, your sister was in here last week.”

Finally, there’s our own hurt as parents.  It’s a smorgasbord of our own experiences and those of our children.  Whoever said stigma is going away hasn’t walked in our shoes.

Fighting stigma is important work.  It’s one part education, two parts advocacy.  There are a lot of misperceptions about children’s mental health needs out in the world.  Campaigns such as Bring Change 2 Mind encourage people to tell their stories, to initiate public awareness events and use social media to start conversations and well, change minds.  But until we see the small things, the looks, the pained smile and the slight drawing away lessen or even stop, we cannot say that we’ve vanquished stigma much at all.