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Check out this amazing interview I got to do with Celia Schouteden over at Peculiars Magazine about my experience with borderline personality disorder.

Ailey, thank you for answering my questions. How would you describe your experience with bpd? Is it something you’ve had your whole life, how did you find out about it?

Thank you for interviewing me, Celia! I am always happy to discuss my mental health in an attempt to end the stigma around mental illness and especially BPD. I started treatment for depression and anxiety when I was 12 years old – my parents found out I had been self-harming and took me to see a therapist and a psychiatrist. Throughout my teenage years, I bounced around from antidepressant to antidepressant, never really finding one that worked. I attempted suicide when I was 15 and struggled with self-harm on and off during those years. I couldn’t vocalize to anyone what was going on in my mind, but I knew something wasn’t right and the combination of antidepressants and CBT wasn’t alleviating any of my symptoms. I finally caught a break when I was hospitalized at 17 because of severe mood swings I experienced after coming off Cymbalta. It was during that hospitalization that I was diagnosed with BPD and put on Lamictal, a medicine that I truly believe has saved my life countless times.

‘I felt like getting the BPD diagnosis helped me understand myself better and ultimately make better use of therapy because I had the vernacular to describe the storm system inside my mind.’

Initially, the diagnosis really scared me because the only time I’d ever heard the term “personality disorder” was in reference to “multiple personality disorder” (which they don’t even call it that anymore) and that seemed way different than what was going on in my head. However, I went home from the hospital and googled BPD and found a list of the diagnostic criteria (this was at the time of the DSM 4). Reading those criteria was another huge turning point in my treatment because I felt like I finally had the words to explain what I was going through – the black and white thinking, the rapid mood cycling, the impulsivity, the dissociation. These were all things I was experiencing but was too young to have had the words to articulate, and I felt like getting the BPD diagnosis helped me understand myself better and ultimately make better use of therapy because I had the vernacular to describe the storm system inside my mind. Looking back, I can definitely recognize some BPD behavior patterns in myself at as young as 13 or 14 but because doctors are so hesitant to diagnose teenagers with BPD, I was being treated for just depression and anxiety. This was ultimately a disservice to me because I suffered so much throughout my teenage years. However, despite all the stigma, I am very grateful for my BPD diagnosis because it brought me back to myself. It was the point in my treatment that has ultimately led me the closest to recovery I think I’ll ever be. I have been off medicines for the past two years and am seeking treatment in weekly therapy. There may be a time when I decide to return to meds for my own stability, but I have made some great strides in my mental health lately and am very proud of myself for that.

What’s your biggest trigger? Have you learned helpful, positive coping mechanisms over the years? If so, which ones?

My biggest trigger is anger, whether someone is angry at me or whether I am experiencing anger myself. My self-harm habit has greatly dissipated over the last 4 years, but when I find myself slipping back into that coping mechanism, it’s never because I’m depressed or suicidal or anxious; it’s because I’m so full of rage, it feels like there are bees under my skin. This isn’t something I experience often as DBT has taught me to be more aware of my emotions and calm myself before I get to that place, but every once in awhile, something sets me off and the energy that fills up my body is like nothing else I’ve ever experienced. I also don’t do well with confrontation with people who are angry at me – my BPD arose out of a chaotic and invalidating childhood where there were many instances of an adult screaming at me for something I had done.

‘But in all those situations where I’m faced with anger, DBT has taught me a lot of great coping mechanisms to help counteract my knee-jerk emotional response.’

Now, at 23 years old, if my manager confronts me about a mistake I made at work or if a friend is upset by something I said and they confront me about it, my anxiety goes into overdrive; it’s difficult to breathe, my hands shake, I can’t stop crying, et cetera et cetera. But in all those situations where I’m faced with anger, DBT has taught me a lot of great coping mechanisms to help counteract my knee-jerk emotional response. I have a self-soothe kit with my favorite lotion, my favorite book, my baby blanket, some candles, and some candy that I pull out when I find myself triggered. I also use a lot of mindfulness breathing exercises, like ten candles. Something my therapist taught me recently that has really helped is I keep a couple of oranges in my freezer and if I feel myself getting triggered, I pull one out and kind of massage it in my hands, which has a two-fold method of calming me down: for one, the coldness of the orange grounds me in the moment and helps me stay present and mindful of reality rather than getting swept up in my emotions, but also as the orange starts to melt, it releases its citrus odor which is actually scientifically proven to help calm down someone who is feeling escalated.

As a patient myself, I know how hard it is to ask for help and then find the one you need. What is your experience with mental health caregivers/services? Do you think it was harder for you as a patient diagnosed with bpd (because of the stigma around it)?

Honestly, I got really lucky. My symptoms started when I was really young and still under my parents’ care, so getting help was never something I had to do for myself. My parents shuttled me around from appointment to appointment, trying to figure out why I was struggling so much and how it could be ameliorated. I never fought back against any of the appointments but even if I had, my parents still had control over my treatment. As far as my experience dealing with BPD stigma from mental health professionals, I’ve never had a therapist turn me away or tell me that I’m incurable, though I have BPD friends who have had that experience. Ever since my BPD diagnosis, I have seen solely DBT therapists, which you obviously know DBT was created for BPD patients by a borderline woman. I think seeking treatment from professionals who are trained to assist people through the hell that is BPD has protected me from facing stigma from caregivers. I have had some nightmarish experiences during in-patient treatment, but I believe that had less to do with me having a BPD diagnosis and more to do with the lack of funding for those institutions across America. No matter how good intentioned the caregivers in those settings are, if the facility itself doesn’t have the proper funding, they can’t truly take care of those in need.

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PC: Tchin O. (@incurablynostalgic)
When I read your story and your poems I shut down for a minute: you were me and I was you. When and why did you start to express yourself through poetry?  Has it influenced your recovery? If yes, how? Also, what goals are you pursuing with it (any project, any specific reasons why you write)?

I’ve been writing for as long as I can remember. There’s a poem I wrote when I was in eighth grade about how my house was a prison and my parents were the prison guards. I wrote a 25 thousand word novel in ninth grade. However, I didn’t really start investing myself in writing as a career until college. I was very involved with music throughout middle school and high school, and followed that into college. During my freshman year, I took an introduction to poetry class for a general education literature requirement. My professor actually pulled me aside at the end of the semester and told me I had a real talent for poetry and she thought I should consider pursuing it as a degree and maybe eventually as a career. I went home and changed my major that night and have been consistently writing for the past four years, though I only started publishing my poems last November. For me, there’s something about the way you can weave language to tell a story that’s very cathartic, the way certain images or phrases can leave you breathless. With something as complex as trauma and BPD, I find that poetry is an especially important way for me to process and discuss what I’ve been through. It’s sometimes difficult to talk about my experiences in plain language but when I can frame that conversation in a poem and use metaphors to express my pain, I find it to be both more comfortable and more powerful. In this way, poetry has helped me deal with experiences that are too burdensome for me to even discuss in therapy. I definitely think writing has been an important part of my recovery because if I didn’t have poetry, I probably would have kept a lot of stuff bottled up, which is never healthy. As far as my goals, I recently just wrote my first chapbook, GRIEF, AND WHAT COMES AFTER.” It’s broken into three sections, Annihilation, Introspection, and Reclamation, and it tells the story of how I lost myself in mental illness and trauma but was eventually able to find myself and my strength again. I’m working on getting it published right now, so keep an eye out!

Those who don’t struggle with this illness usually have a hard time understanding how bad is our emotional regulation and why we act the way we do out of anger or sadness for example: “People with bpd are like people with third degree burns over 90% of their bodies. Lacking emotional skin, they feel agony at the slightest touch or movement.”
We have no emotional skin as Marsha Linehan once said in an interview. Although most of the time we’d probably agree to call it  a curse do you think that suffering from bpd can sometimes be a blessing? If so, why and when?

I have always known myself to be the kind of person who feels things very strongly, even before my BPD diagnosis. I am a very emotional person. There are times when that has worked to my detriment, in professional settings, in school, in relationships, but as a whole, it is something I’m grateful for. I feel that there is so much more joy to living when you are able to open yourself up to the full range of emotions that come with existing. I know that in current social culture, it’s sometimes “cool” to act like you don’t care about anything and nothing phases you, but to me, that kind of lifestyle has no appeal. Now that I have the coping mechanisms to regulate how my emotions manifest in my behavior, I am grateful for the extent to which I am able to feel. There is so much more happiness and love in my life. Granted, my lows are lower than they are for most people, but I’ve learned to accept that that’s a really beautiful gift, just being able to feel. I am also an incredibly empathetic person, which is a major staple of people with BPD. It can be exhausting and it can cause people with ill intentions to take advantage of me, but ultimately, I find a great deal of satisfaction in my ability to empathize with and show compassion to people who are struggling. I think that if someone with BPD doesn’t have the skills to manage how they behave in reaction to the extreme emotions, lacking emotional skin would definitely be a curse. But DBT has taught me so much in the last 6 years that has allowed me to fully experience my emotions in a healthy manner and I am so thankful for that.

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