Borderline Families

The exhausted parents of mentally ill children are often accused by medical professionals of poor parenting that results in the symptoms of mental illness present in their children. Despite being hurt beyond repair for this continuous blame, we keep caring for our sick children. In fact, it is usually the mothers who are held responsible.

The “difficult” child, born without the reasoning skills or emotional infrastructure to control themselves, are challenging to raise. What works for one child will not work for these kids. Frustration, anger, hard-to-acquire understanding are hallmarks of a family with a mentally ill child. Parenting becomes an instinctual process of trial and error, with the main goal being to protect our children from themselves, be their advocate, mostly during crises and drama. Yet, the environment we provided was “lacking” or “we didn’t validate our struggling children enough”, or we were “tired and overworked and made mistakes that cost our children the security they deserved”.

In fact, most of us were jumping through every hoop in sight hoping that one clean jump would trip the correct wire and send the elusive cascade of healing our way.

I believe that our children were born with a cloud of confusion obscuring the road ahead. As parents we tried to clear a path and failed every time because nurturing  these kids is virtually impossible for a family alone. We provide for and tend with care and, still, they fail. Not because we have abused them, but because they can’t do it.  Why not? Who knows? Brain chemistry? Different wiring? They can’t do it (stay clean, stay out of trouble, avoid stress, function)- despite the heroic efforts parents make. These kids cannot behave they way society demands. They are ostracized before they have a chance and we,  the scapegoats, are accused of poor parenting.

This vicious cycle of accusation and failure causes too many families with  mentally ill members to implode. Fingers point to the drained and weary parents. Doctors look at us suspiciously. What did we do behind closed door? It makes me want to scream!!! NOTHING! STOP trying to place blame and concentrate on relieving my daughter’s symptoms.

The kids do pick up on this. We once received a letter from my daughter delineating our shortcomings as parents. This was done in a group therapy session. It was horrifying.

How did it go down? Did the counselor encourage the participants to “get if off” their chest? And, then, “Let’s send it to your unwitting parents and see if we get a reaction.”  I nearly threw up. We were in the car on the way for a short get-away. I opened the letter. It was a huge pice of paper with the family tree drawn on it. The abominations each member of the family supposedly enacted on my daughter were in balloons next to their name. I could see how she got angrier as her writing got sloppier. Then, in a frenzy she folded it into an odd shape and stuffed it into an envelope.

We are not all saints. But, most of the parents I have met who are care-taking a mentally ill family member have given most of their livelihoods to treatment, have stay in jobs they don’t want in order to keep insurance, get little sleep, worry and fret over what they cannot change. We are accused of being lousy parents and we keep going.

The mentally ill are shamed and disgraced in this country. Someone as precious and vulnerable as my daughter wouldn’t have a fighting chance without the love and support of her family.

Bipolar/BPD

During the month of May, Susan the blogger who writes A Journey, wrote about the stigma attached to the diagnosis of mental illness. I began to think about how a “normal” family like ours was totally hijacked by an illness that is so far outside the margins of acceptability in our society. Running into the stigma against the mentally ill was very surprising and very upsetting for our family.

The diagnosis of mental illness of family member feels like being ambushed. No matter how long symptoms have been present, the family feels like they are the victims of a surprise attack coming out of nowhere. Once handed down, it is not unusual for the diagnosis to be disregarded, as if the person has been wrongly identified. Close the door and point up the street. Not us, this has to be a case of mistaken identity. The verdict of mental illness is almost impossible to take in at face value. You need time to wrap your mind around it. You need time to figure out what exactly it means.

When my daughter was first diagnosed, thoughts of how severe it might be began to take over. We read books in vain attempts to verify just how sick our daughter was, or more hopefully, wasn’t. I held my daughter up against all the examples given in the books and deemed her highly functioning, except when she wasn’t. And, when she wasn’t doing well, for a long time I attributed her helplessness to a rough day a school – all kids have those. Or, I commiserated about peer pressure and deemed my daughter to be more evolved (!) and in touch with her sweet, sensitive side. Everyone else was a bully.

We ignored flagrant signs for years. Our daughter was gifted. She was unique. She was special. All of this was true, but she was also struggling to maintain a semblance of normalcy and right up until the lid blew off, we thought she was going to “work it out”.

I have said this before: undiagnosed mental illness looks like bad behavior. The person appears to be spoiled, self-indulgent, obsessive, unappreciative, angry, and demanding. We accused our daughter of all these things and more. And, of course, we feel shame now for not understanding what was going on when she was struggling the hardest. We would shake our heads and wonder if she was doing it on purpose.  All the fights and constant tension in our house was sickening.

The conflict and chaos pitted our daughter against us for years.

The stigma of mental illness is so profound, it is not like any other diagnosis. If cancer, diabetes, or heart disease is discovered, you discuss it with friends and family, compare notes and weigh treatment options with other survivors. There is no discussion of mental illness with the neighbors. Sometimes, even families do not want to talk about it. Mental illness becomes a closely guarded family secret. I wrote a book about my daughter’s search for relief through the mental healthcare industry in this country which my parents would prefer was left under my bed, or better yet, burned.

It takes awhile to get used to carrying around the label of mental illness. If someone in your family is mentally ill, everyone is affected. At first we concealed it, fabricated stories and finally, years into it, probably when we realized that it wasn’t going to miraculously go away, we accepted it. Our daughter’s story is part of the fabric of our daily life. We cannot turn a blind eye to it, nor do we want to. In fact, now we want to tell everyone about the horrific condition we discovered the US mental healthcare industry is in.

What we did to survive was educate ourselves. Know your enemy. It is a steep and difficult learning curve. Much of the information is ugly and frightening. Even grasping the symptoms of borderline and bipolar took years and I am still stunned by some behaviors. Her diagnoses varied as she sought treatment from place to place, adding and subtracting and adding again:  ADHD, bipolar, borderline personality disorder, body dysmorphia, addiction, anxiety, mild autism, depression and PTSD. There are a lot of symptoms to remember.

The care of the mentally ill in this country is far from the easy perfection the pharmaceutical companies would like you to believe. Rarely does one drug work as well as the pharmaceutical companies portray in television and magazine advertising. It is usually a delicate adjustment of a number of drugs that the psychiatrists are after. It can take a very long time to get each med to a therapeutic dose. It is often a painful journey.

Our family learned the names of drugs most commonly prescribed for the various illnesses that my daughter was diagnosed with and what to expect from side effects. We learned about various therapies: psychodynamic, interpersonal, cognitive and behavioral. We encouraged our daughter to attend DBT classes, do EMDR.  We searched for reputable doctors. We made a multitude of mistakes along the way. But, as I am documenting in the blog, we try very hard to help her.

Bipolar/BPD Behavioral Therapy, Cognitive Therapy, DBT, EMDR, Interpersonal Therapy, Pharmaceutical companies, Psychodynamic Therapy, Stigma of Mental Illness