by Janice Papolos and Demitri F. Papolos, M.D.
In our book, The Bipolar Child, we talk constantly about the burdens that parents of children with bipolar disorder must shoulder and overcome, all the while attempting to make decisions with the clinicians who work in an area of medicine that is still in its infancy.
But we’ve never composed a stand-alone list that lets others look at what the parents must grapple with and withstand — in all its stark and disturbing reality.
This list, sadly, cannot even be described as “exhaustive or complete,” but the parents coping with a child (or children) with bipolar disorder deserve special recognition and honor for their enormous valor as they:
- Look at a very young and much-loved child with a nagging fear that something is seriously wrong.
- Feel the external world bearing down on them, advising them to take multiple parenting classes or to tune into Nanny 911. Feel infantilized and ashamed as people offer up criticism and advice.
- Accept that they need help from a professional, but feel a stranglehold of fear.
- Come to learn that there are only 4,101 child psychiatrists in the entire United States–many wary of making this diagnosis.
- Watch their child and other siblings besieged by an illness for which there is little diagnostic or treatment consensus in the field of psychiatry.
- Receive multiple diagnoses such as ADHD, OCD, ODD, PDD, anxiety disorder, or simple depression.
- Come to accept that the child has a very serious psychiatric illness and make the agonizing decision to begin a trial of medications (if they can find a psychiatrist who can treat their child, or who has open hours).
- Read the package inserts of medications which list possible side effects, as well as frightening black-box labels, and watch apprehensively for any signs of serious trouble such as lithium toxicity, tardive dyskinesia, Stevens-Johnson syndrome, new-onset type-II diabetes, or pancreatitis.
- Attempt to explain to a child how the doctor is trying to help and what the medications are going to do; subsequently they watch their child experience distressing early side effects that include nausea and diarrhea and severe drowsiness; or worse, the paradoxical effects that produce the opposite reaction of what the drug is being used to treat.
- Deal with the disillusionment of a failed medication trial and explain to that child why those pills didn’t work and tell him or her: “We’re going to try something else,” knowing that they may have to repeat that phrase a number of times and thus begin a new round of side effects.
- Have to get a child who has a needle phobia to a lab for a blood draw to determine drug levels. (This experience alone could turn one’s hair grey.)
- Watch children’s weight balloon upward and their self-esteem plummet as they take certain medications that can be very effective, but that may also cause weight gain.
- Become an all too familiar face at the pharmacy, experiencing shock at the cost of each prescription.
- Have to suffer the ignorance of people in the media, who–in a cavalier manner–discuss over-diagnosis and over-medication. Moreover, these parents hear certain clinicians in the field publicly utter insulting sound bites such as: “This is an easy way for parents to let themselves off the hook;” or “This is simply the diagnosis du jour.”
- Have to listen to the word “No!” from a child one hundred times each morning, but be unable to assert the parental “No” as it will predictably trigger a meltdown.
- Suffer the physical abuse of a child raging out of control, and experience crippling shame because they can’t manage their own child.
- Are set adrift in a house that has become a war zone.
- Deal with feelings that alternate from extreme anger at the child to the most unbelievable yearning to help that child, from anger at the outside world for failing to realize what is happening to them, to exhaustion in trying to deal with the child with some modicum of equanimity.
- Become perplexed that their child often does well in the outside world, only to return to the safe harbor of home to rage at a parent (most often the mother), leading to the suspicions of outsiders that “Something must be going on in that household, and with that woman;” or “She seems so nice, but you never really know people;” or “He can keep it together at school, so he must be a very manipulative kid.
- Have to mount a siege each school-day morning simply to get a child suffering a sleep/wake reversal up and out to school.
- Hesitate to answer a phone, afraid that it will be the vice-principal in charge of disciplinary action calling to report an “incident” at school.
- Come close to earning a degree in educational law so as to work with the school system. Keep in constant contact with the teachers and psychologist or aide in order to assess what’s working and where yet another accommodation may help.
- Waylay careers and reduce household income so a parent can stay at home to deal with the child and spend hours at doctors’ and therapists’ and tutors’ offices.
- Experience the heartbreak of knowing that their child is rarely invited to birthday parties. Conversely, if he or she is invited, the event might be overstimulating thus provoking some kind of meltdown, and effectively putting an end to any such celebrations in the future.
- Fear that their child will become aggressive with kids on the playground or in the neighborhood, thus earning disdain and a cold shoulder from the other parents.
- Want the world to understand, but fear that the stigma will further isolate the child and their family.
- Attempt to explain the almost inexplicable to the siblings, and to help them cope with the chaos in the household. Feel overwhelming guilt that the family is always fractured as one parent goes to a soccer game while the other stays home with the unstable child; or that a rare dinner at a restaurant devolves into an embarrassing, abruptly-ended event as parents race the child and siblings home and away from disapproving diners.
- Are paralyzed if a child becomes manic and hypersexual and says inappropriate things or makes inappropriate gestures.
- See their marriages become shaky as the stress of coping with this illness leaves parents little time to relate to each other and most conversations begin to center around the problems of their ill child.
- Listen with horror as their child screams, “I don’t want to live anymore;” or “I’d be better off dead.”
It is hard to fathom how these parents get through a day. Their reality is simply unimaginable to the outside world, and their lives–until their children are stable–are a virtual stew of guilt and powerlessness, anxiety, fear, uncertainty, confusion, blame, and shame. These are feelings that most of us would do anything to avoid, but all are feelings that a family who lives with bipolar disorder must endure for months and years at a time.
And yet, we see family after family find the help, learn to cope, steady their footing, and move on with their lives. And then we see them turn around and offer a lifeline of information and support to others who must walk the same path, only now no longer alone.
We celebrate these parents: their grit and their commitment, their love and their humanity….Parents who have never stopped trying to help their children — against seemingly overwhelming odds.
Demitri Papolos, M.D. is an associate professor of psychiatry at the Albert Einstein College of Medicine in New York City, where he is the co-director of the Program in Behavioral Genetics. In 2001, Dr. Papolos became the director of research of the Juvenile Bipolar Research Foundation (JBRF) where he established a consortium of clinical and basic researchers from medical centers across the country in order to focus on the root causes of childhood-onset bipolar disorder.
Demitri F. Papolos, M.D. is one of a handful of psychiatrists in the world who began to see and to speak out about the possible deleterious effects of antidepressants and stimulants in the population of children within the bipolar spectrum. His extensive work with youngsters with the condition and their families, led him to team with his author wife, Janice Papolos, to write the first book ever published on the subject of early-onset bipolar disorder, The Bipolar Child. In its first and second editions, the book returned to press 23 times and third edition was published in 2006.
Dr. Papolos earned his undergraduate degree at Harvard and completed his medical training at New York Medical College and the New York State Psychiatric Institute at Columbia Presbyterian. He is in private practice in New York City and Westport, Connecticut.
This article originally appeared in his online newsletter, which you can subscribe to at his website BipolarChild.com.