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."
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."
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."
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."