I have been putting off this blog for some time, because I
don’t like to traipse down memory lane, but in light of recent events in our
country, I think it necessary to put this out there.
I was 14 when I had my first depressive episode. It lasted about 6 months. My second occurred when I was 17 and lasted
about 6 months. These episodes were not
just “sadness” or “being down”. They
were overcast and gray with no energy and there was no idea of there being a
future of any kind.
When I was 21 I experienced a depressive episode worse than
anything I had experienced before. It
lasted 10 months and took me past suicidal ideation to a flat line. I experienced absolutely no feeling of any kind. I was numb, and I eventually developed a
psychotic feature that began to shut my body down. Lack of sleep was the instigator of the
psychotic break, and it was perpetuated by severe and continual
depression.
Over the next 10 years I struggled to find help, diagnosis,
and stability. Most of you who know me
and read my blog know I have bipolar II and agoraphobia with panic
attacks. So, this blog is more about the
mental health process I went through, such as it was, to get to where I am
now.
I had someone watching out for me, who worked through
vocational rehabilitation in Minot, ND where I was going to school. She called my mom and told her I was going to
kill myself before the term ended if I was not pulled out and watched. That was the first significant aide I
received, and it was not from the mental healthcare system but from someone in
another organization affiliated.
When I got home, no one knew what to do with me. My parents had never encountered mental
illness, so they just kept me close and hoped it would pass. I knew, after nearly a year of broken down
mental health, that I would not survive another such episode. Fortunately, I had a friend whose husband was
a physician, and they got me to a friend who was a psychiatrist. He was beneficial to helping me, but he was
also over a hundred dollars a session, and with someone as seriously ill as I
was, I had to go once a week for a while.
You do the math. I had no
insurance. I had no job. My parents were still raising children and on
a budget. I was told that there was no
way to afford treatment. I had no place
to go. I had been shown someone who
might be able to help me with something I had seemingly “contracted” but I
couldn’t have it, because there was no way to afford it. At that time there was very little financial
aid for people in my position. I was
desperate, because I knew the next round of depression would be my last.
My friend stepped in again and helped me financially. She basically saved my life. She recognized there was something seriously
wrong that wasn’t going to just go away.
I remember her telling me that 22 was too young to be dealing with life
and death decisions every single day.
So, I continued to see the doctor, and we began the very long and costly
road of finding me a diagnosis. The cost
of medications was astronomical. It
isn’t like taking an antibiotic for a cold.
You gotta play around with eliminating depression, ADD, and any number
of other illnesses before you hit the grand slam mental illnesses of either
bipolar of schizophrenia. A good doctor
will hope for the least invasive illnesses and begin to rule them out and work
up to the big ones. Unfortunately for me,
anti-depressants and stimulants threw me into mania, and after a year, we knew
I had bipolar, based on a long period of trial and error.
It is valuable in our current mental healthcare system to
get a diagnosis, because that is how one gets on the right pharmaceutical
regimen. So, there I was at 23, newly diagnosed,
thinking, “Okay, I will take a pill and get on with life.” Right…My body hated psychiatric meds. I had violent illness, blisters, and
hives. I bloated up like the blueberry
girl who ate the gum on “Willy Wonka and the Chocolate Factory,” minus the
blue. And through it all, the moods
continued with mania and extreme depression, often exacerbated due to the meds
rather than curtailed.
I knew there was stigma out there, but I didn’t understand
how deep it went. My biology professor
in Minot told me when I told him I had to withdraw due to mental illness that
if I was mentally ill, I didn’t belong in college (The petty child in my very
much wants to find him and rub my doctorate in his face!). But I didn’t realize that my illness could be
hazardous to me in a social context until my psychiatrist cautioned me about
telling anyone about my illness, especially anywhere I worked. At that point I had to make a decision, was I
going to buy into shame about my illness, or was I going to refuse to accept
guilt over something that landed in my lap due to biology and genetics. I chose the latter, and with that choice came
transparency and an opening to be hurt, discriminated against, and rejection,
all of which I fully expected from society but not from those in the profession
who were supposed to help me.
I saw my psychologist for several years. We finally tapped out our options for meds
and were able to land on lithium.
Lithium was really hard on my stomach, and when I moved to Kansas City
with my sister, I found anxiety exacerbated the medications interaction on me
physically. I had continual stomach
issues, and as this small town girl grappled with living in a big city and
working downtown KC with a 40 mile commute (round trip) every day through major
traffic, I developed an anxiety disorder called agoraphobia with panic
attacks. So, seven years into my
diagnosis of BP, I now had another illness, and it was absolutely
debilitating. I could not leave the
house without becoming physically sick.
Panic attacks ensued every time I went to the grocery store or
Wal-Mart. I had them on the way to work,
on the way home, and off and on throughout my work day. The mental toll cause major upheaval with the
BP and the two fed off each other.
Mental healthcare at the time was sketchy. I had insurance but had to use those in
network for treatment, and even then very little was covered. Average cost for a med check was $100 and for
extended consultation if I was having issues, it was nearly double. The first psychiatrist I saw in network felt
he could treat the anxiety by increasing my lithium. He increased it so much that it nearly killed
me. So, I had to go off the lithium,
which left me unprotected from the BP and the severe depression that always
quickly slides in when I’m unstable. I
found another doctor through a friend, and though I had to travel all the way
across KC to see him, it was worth it, for he rescued me. He got me leveled out and on a different type
of lithium and began to teach me how to handle my illnesses. He educated me and informed me I had to be an
authority on my illnesses as many in the profession do not know what they are
doing. Then he was indicted for selling
pharmaceuticals from his home. I had to
find another doctor.
The next doctor I found wanted to put me on Haldol the first
visit we had, which is an antipsychotic and very invasive, often used for
treating schizophrenia. When I passed on
the med change based on him not even having read my file, he was offended. He talked down to me as though I was an
idiot, telling me that I could not just have meds. He told me I needed to take care of myself
and get regular blood work, and that if I could not do what he directed he would
not prescribe to me. Every time I went
in to see him, I left feeling like a chastised child, punished for crimes I had
not committed. Left untreated, the
agoraphobia got worse. I desperately
needed therapy, but my bills for the treatment I was receiving were in the
double digits. It came down to me
choosing to either get the meds or get therapy.
I knew the BP required lithium, so I chose meds.
I tried a couple therapists in my network to see if I could
get some therapy to help me. The first
one told me she was very threatened by mental illness, knew little about it,
and couldn’t help me. The second
therapist looked around like I was going to rob her when I told her I had a
mental illness. She told me she was not
comfortable working with the mentally ill.
The interesting thing with that was that when I applied for social
security to get some help, they had a therapist assess my mental state and
competency. I walked in for the
appointment and low and behold, the therapist they had hired was the therapist
who had told me she knew little about mental illness. The results of the session with her came back
that I did not need SS because I could work in a fast-food restaurant. My big
Italian therapist (the one who was indicted) shook his head, emitted a very
committed profanity and said, “That is the dumbest thing I have ever
heard. You in a fast food restaurant
would be a step towards ending the world.”
Had he not ended up in prison, my story might have turned out very
different…
There was no assistance, no support, nothing in the mental
healthcare system that either lent itself to be found or utilized. That is when I decided I was going to go into
psychology, so I could really help people with mental illness. I felt the mental healthcare system lacked practical
help and humanity, and I still feel the same today.
We moved to Alaska, and at that time the agoraphobia had
made me a prisoner in my home for nearly a year. Because it was so out of control, it had
caused instability with the BP and I had a series of three very significant
“crashes” where mental function was fractured to the point of
non-functioning. It is difficult to
describe such a thing to a person who has never encountered such a phenomena,
but suffice to say the body is there, the mind is laying in pieces, and the
brain is shooting off electrical sparks and smoke, over-connecting in some
areas and not connecting at all in most.
My family was on board with this round of psychosis. I went to stay with my sister and finally got
a few months of therapy along with continued pharmaceutical regimen. It only happened for a brief period with a
professional willing to work with me without much compensation, but that time
helped me get a mental grip. The move to
Alaska opened up a new world for me, as I entered the world of academia and
psychology. I found a home at that
university, and to be honest, the best help I ever received came from my
professors in the psychology department rather than the mental healthcare
system. I learned to take control of all
aspects of my mental health. I became an
authority on my illness, and it helped me ascertain who should be on my “team”
to help me be as healthy as possible.
I found a therapist through my mentor professor. She was a nurse practitioner and therapist. She was the first professional to address my
agoraphobia both through therapy and medication. Coupled with insights from my mentor who was
a behaviorist, I began to make progress with the agoraphobia, which in turn,
created more stability with the BP.
Years later, at 41, and after five years of stability in
both illnesses, I will say I am not “recovered” as our mental healthcare system
insists is possible. I have accepted
that I have two invasive illnesses, uninvited guests, that inhabit my being. Most the time, as long as I keep things the
way they like it, I live in harmony with them.
When I let my life get too messy or filled with stress, they protest. But I never assume that I am well, and I no
longer draw lines at what I may or may not be capable of in terms of
accomplishment. I live with the
knowledge that I could have had a very different life without these illnesses,
that I lost my youth and most of my transitional thirties to the throes of
trying to survive, but I do not lament any of it. It
does no good to waste energy on such frivolousness. I cannot attribute any of
this wisdom to something I learned from the healthcare system I was a part
of. For the most part it failed me. Those who did help for a time were either so
expensive I could not afford them, they were undereducated, or their own issues
caused them to become impotent in their profession.
L
