March 2010, Pam Lipp received the call she'd been dreading for
months. She figured it would come from one of three places: the police, the
hospital or the morgue. Instead, it was her husband, Doug, saying that he'd
just received word that their 18-year-old daughter, Amanda, a freshman at Chico
State University in California, was being held at a psychiatric crisis center
after trying to throw herself in front of a moving car. Amanda had lost her
grip on reality and fallen into a state of psychosis. She'd started selling off
her belongings and believed that cameras were following her everywhere.
Doug was away at a speaking engagement, so Pam jumped in the car
with a friend and raced to the crisis center two hours away. When they arrived,
they found Amanda, curled up in a ball on the floor in a fetal position,
sobbing. "I was hallucinating. I thought I was a doctor. When my mom got
there, I realized I was the one in trouble," says Amanda. "Nothing
prepares you for seeing your child in such turmoil. I felt helpless," says
Pam.
Amanda was soon diagnosed with bipolar disorder, a mental
illness characterized by manic highs, depressive lows and possible periods of
psychosis. Although the diagnosis provided a new direction to what had been an
all-consuming journey for the Lipp family, it was just one stop on the bumpy
road to navigating the mental health system. The Lipps are not alone: Nearly
one in five Americans experiences a mental illness in any given year, but fewer
than half of them receive treatment.
Early signs
Amanda first started acting out when she was in middle school in
Fair Oaks, California. She had extreme mood swings and explosive arguments with
her parents. Pam and Doug, who run a small business together, hoped it was
typical adolescent drama that would soon fade. "We never knew which Amanda
we were going to get," Pam recalls — the edgy Amanda looking for a heated
debate, or the down, depressed Amanda who would retreat to her room.
Eventually, the intensity and unpredictability of her moods made them realize
she needed professional help.
They took her to the family doctor, who agreed that Amanda
required more help but said that she didn't have anyone to refer her to.
Instead, the doctor recommended that Pam request a copy of all the therapists
in her zip code who worked with her insurance company and call down the list.
Pam called dozens of practitioners, leaving message after message. Not only was
the list outdated, but most were too busy to even see her daughter and the ones
who were highly recommended didn't accept her insurance anymore.
For her part, Amanda was reluctant about seeing a therapist. She
worried about what other people might think, and that it would change the image
she had of herself. "I was the popular kid who people looked up to,"
says Amanda. "I thought that if my friends saw me as someone to be pitied,
they wouldn't lean on me anymore. Part of me wanted to get help, yet the other
part of me didn't want to admit I needed it."
She agreed to give therapy a try and Pam found someone Amanda
was comfortable with. Yet, at an out-of-pocket rate of $120 per hour, the Lipps
just couldn't afford the amount of care she needed, which was about three
sessions per week. She visited a psychiatrist and was diagnosed with depression
and put on an antidepressant. Despite the treatment, Amanda continued to spiral
downward — staying out late, self-medicating with drugs and arguing with her
family.
During those years, Pam says, she and Doug were living one
exhausting day to the next. They had three children to raise, but taking care
of Amanda consumed their lives. "We felt like we were in prison in our own
home with all the hostility and upheaval."
By the time Amanda headed to college, she was barely speaking to
her parents.
Fighting for care
Amanda's bipolar diagnosis was a turning point — it meant that
she could begin to receive the treatment she desperately needed. But it wasn't
easy to find at first.
The crisis center would only hold her for a maximum of 72 hours,
and Amanda needed much more treatment than that. When Pam asked where her
daughter would be sent next, the doctor told her Amanda would be discharged and
likely end up back in the center.
So Pam spent the next day in the crisis center waiting room,
desperately calling one psychiatric hospital after another to find a place to
send Amanda. They were all full. She begged them to call her back when they had
an opening, but they told her they couldn't reserve a spot. Instead, they told
her to call every half hour in the hope that she'd be able to grab the next
available bed. Pam plugged her cellphone into the waiting room wall and
repeatedly called each one on speed dial. "You go into mother-bear mode,
where you dig in and do what you have to do to protect your cub. I knew I
couldn't stop until Amanda had the help she needed," says Pam.
After eight hours of continuous dialing, Pam finally found
Amanda an open bed at a hospital near their home. For Pam, it was a huge relief
that her daughter was safe. "We felt like we were finally entering a new
phase of tackling her condition. In the hospital, at least we knew where she
was and that she was under a watchful eye. We felt safest knowing she didn't
have a choice to leave."
But Amanda had a different perspective. She didn't see her
psychosis as a disease — she saw it as a transformation where she was finally
able to face her vulnerability and deal with her issues.
"In the hospital, I felt like a prisoner," she says.
"I felt trapped in a space where people were always watching me and
monitoring my behavior." Amanda is an artist who finds solace in
creativity, but she says the staff in the hospital was more focused on trying
to treat her medically and didn't seem to value what she was doing with her
art. "Trying to express myself and heal felt impossible," she says.
Figuring out finances
While Amanda was in the hospital, Pam was gripped with fear over
the coverage of the treatment. "I was terrified that insurance would run
out and we'd lose our savings and everything we'd worked for."
Fortunately, a federal law passed in 2008 guarantees that mental
illnesses be covered "at parity" with any other disease, without
special limitations. Her insurer informed Pam that any care Amanda needed would
be covered. "I was so relieved," says Pam.
After a month in the hospital, two months of a full-time
outpatient program, the temporary help of an antipsychotic medication and years
of therapy with a new psychologist, Amanda made an impressive recovery, learning
to manage her condition.
A key point for her was a change in perspective. She went from
seeing her symptoms as evidence of illness to seeing them as strengths that she
could use to her benefit. For example, she could turn a period of introspection
that she might have previously seen as "depression" into a piece of
art.
Living out loud
Many families end up running into similar obstacles — they don't
know where to go for proper care or they're worried about the cost. But there's
also the stigma of mental illness that prevents people from reaching out
because they fear judgment or worry that it might affect their jobs.
"When you break a leg, you get a cast and people sign it
and put smiley faces on it. When you're given a mental illness diagnosis, you're
cast out," says Amanda, who is now a 24-year-old college graduate and
member of the board of California's National Alliance on Mental Illness, an
advocacy group..
It truly took a village and a community of friends to help
Amanda heal.
Fortunately, Pam wasn't afraid of the stigma, having learned
from her own family's mistakes. "I grew up in an environment where
everything was pushed under the rug," she says. "People were
suffering from mental illness, but they blamed it on other things like
migraines. In reality, they needed therapy. I wasn't going to let that happen
with Amanda."
Pam faced the stigma head-on and was completely open with her
friends about what was happening. While this didn't help the Lipps crack the
code on their daughter's illness earlier, it gave them strength when they
needed it.
"Mental illness is not usually a casserole disease — when
you tell your friends that a family member is suffering from a mental illness,
they don't deliver a lasagna. But in our case, our friends did because we were
open about it," says Pam.
People rallied around her. In particular, Pam was already part
of a monthly mothers' group that got together to make care packages for their
children in college. The other women urged her to keep coming to the group and
making care packages for Amanda throughout her illness. "They were my rock
of friendship. It truly took a village and a community of friends to help
Amanda heal," says Pam.
Finding hope
Hard-won strides in the area of mental illness like the parity
law helped Pam and her family get through the crisis intact, but it was a
difficult road.
"We're so proud of Amanda and everything she's
overcome," says Pam. That doesn't mean she's stopped worrying. "We
experienced a mental health emergency, an illness and a recovery, and now we're
stable. But every day I wake up and worry, could she relapse?" For anyone
with a history of psychosis, another breakdown is always a possibility.
Now armed with knowledge and experience, Pam feels more
confident. And in the meantime, both mother and daughter are dedicated to
raising awareness and helping other families find the hope and the care they
need in a system that often seems to be working against them.
For women facing similar situations, Pam has this advice:
"Treat mental health concerns like you would any condition. Don't let the
stigma be a roadblock to getting yourself and your family the care that's
needed. If your gut tells you there's something going on with your child, look
the issue in the face and get the help you need."