Misdiagnosis and
Invalidating Environment
Tess Smith was diagnosed with Borderline
Personality Disorder in 2006 after 16 years of treatment for dysthymia, anxiety,
and obsessive compulsive disorder. A misdiagnosis that resulted
from her lack of trust in adults as a child, and miscommunication with
therapists as an adult. "In 2006 my primary
diagnosis was BPD in addition to depression, anxiety and OCD. I started seeing
a therapist when I was 14, it took many years for them do diagnose me
correctly because I didn't trust anyone enough
to admit I was a cutter. Growing up mental
illness was not anything we talked about in my family. When I was first
diagnosed (with depression, anxiety, and OCD) my mother didn't want to discuss
it or even look into it. She told me I was “in control of my feelings” and I “just
needed to get better”, so for many years it was a dark secret.
I hid it from everyone, I didn't talk about it, and I sure didn't look for
others like me. There’s a lot of shame in a mental illness diagnosis."
Tess's
secret kept her sick and her environment growing up was very invalidating, "my father died when I was 12, he was sick for years so
growing up I wasn't close to any adults. We weren't able to ever express how we were feeling, it was always
very important to look perfect. There were several situations in which I felt I
had been lied to and my trust betrayed. I never felt like I could trust my mom,
and her reaction to my initial mental illness diagnosis made it clear she wasn't going to be very supportive.” Tess's secret mental health issues
continued throughout her teen and early adult years, " In
my teens I never felt like I could talk to anyone about what I was doing
without them telling my mother... and when I became an adult, no one ever came
out and asked me if I was a self injurer." It has taken Tess a long time to get to where
she is today, “22 years of off and on therapy and prescriptions for Prozac,
Wellbutrin, Remerol, Ambien, Xanax, Clonazepam, and Trazadone."
BPD and Stigma
In 2006
Tess found little information about
her diagnosis online, "I had never heard of
it... and when I found out what little there was out in the mainstream media about
it - it wasn't easy to wrap my head around. The
movie everyone knows is Fatal Attraction... no one wants to be that crazy
chick... and accepting the diagnosis is one of the hardest things - but the
first step I think in getting better."
Treatment & Hope
When she was diagnosed
in 2006, she was referred to Dialectical Behavioral Therapy.
Unfortunately, the first class was full, then there weren't any that met
her work schedule, and then she lost her insurance coverage. When she
again had coverage to attend DBT classes, she couldn't get
time off of work to go. At that point Tess took her treatment into her own
hands, "I did my own research and
thank gods for the internet in 2011 because it gave me access to self help and
the DBT tools I needed to at least get going. This is a long term thing… something
I will have to manage for the rest of my life. Has it improved? YES! Simple
skills I was able to find online have helped me when interacting with everyone
and in almost every situation. My personal relationships have improved and are
more stable and I find myself willing to put a little more of myself out there,
in order to improve life. I do continue to take Prozac to alleviate the
symptoms of anxiety and depression, but use DBT skills to manage my Borderline
Personality Disorder."
Relationships
Along
with Tess's new coping skills, she is also developing friendships, "I'm very careful with whom I let get close... I've
surrounded myself now with a handful of friends who I depend on. I'm
better with some distance though... I don't talk on the phone or hang out - I
text, IM online... I don't go out. I am more comfortable when I can
control my environment and who I am with. I don't
seem to have conventional relationships...I've been married 4 times, and the
longest relationship I've ever had is with my cat."
Ongoing Struggles
For
Tess the hardest part of her BPD diagnosis is the emotional dysregulation,
"my rapid and intense mood swings. I go from loving the ground you walk on
to 'I can’t stand the sound of you breathing' in 2 seconds flat. It’s
hard for me to pin-point what I'm feeling, and then I have to figure out why
I'm feeling it... every swing is an internal dialogue. It’s hard to just
'be'… it seems like I’m always trying to figure out what I’m feeling and if it’s
appropriate. I feel tired a lot."
Successes
For
Tess getting the right diagnosis made a big difference, "it helped because
I finally knew what I needed to do. My life was always on reset about every 4
years; a new address, new husband, and a new job. I didn't feel like I could be
anywhere for very long without destroying everything. I had a stressful
job, the diagnosis made
me realize that maybe I liked what I was doing but not the position I was in, because
it was just too demanding. I’m not built for that kind of long term exposure to
stress. I now have a career in the same type of industry, but my day to
day is very different. My interpersonal skills have improved, and I'm able to
communicate what it is I want - instead of just being upset about not getting
what I need. This whole time it’s been like being lost... and then getting a
GPS.”
What
would Tess like those without Borderline Personality Disorder to understand
about those who do have it? "I’d like them to know that we don't mean to
be cruel. It’s a protective mechanism that's a knee jerk reaction - we don't
aim to hurt you. We can seem distant or self-absorbed… if you get burned
you pull away and it looks/seems like were lashing out. I think
the main underlying issue of BPD is that we grew up in an environment we didn't
feel safe in, and no one ever taught us coping skills - so we made our
own."
"I used
to think having a mental illness made me weak... I felt emotions more than
other people and it made me different. I've learned now to look at it as a
source of strength, my perspective has changed. With tools, friends, and
willpower - I am strong enough to get better."
