Okay, so I have BPD…now what?
Google ‘BPD support resources/groups’ – or something similar – and the results can be pretty daunting if you are someone who actually has been diagnosed with Borderline Personalty Disorder. Most of the supports are for people who have been ‘affected’ by people who have a diagnosis of BPD. And what they have to say isn’t very pleasant, so it can be confusing, overwhelming, and aggravating if you are new to the diagnosis, or just struggling and looking for support. Or, you may notice that a lot of the people seem to be distressed or all over the place, or mention things like suicide or wanting to give up, and get discouraged easily. Add to that the fact that not a lot of professionals want to ‘deal’ with patients who have BPD, and it paints a pretty bleak picture. I remember telling an ex-counselor of mine during our last conversation that I had been diagnosed with BPD. She said that she had done some work with an amazing female psychiatrist who had been researching her book on personality disorders, and when she had asked another professional in the field what his recommendation was for BPD treatment, he said (seriously), ‘Refer them to someone else.’
I was diagnosed in the spring of last year, at the age of 31. It was the first I had heard of the disorder, and to be honest, I was disappointed. I didn’t know anything about it and I was hoping for something more recognizable, like schizophrenia. That may sound strange to most, but when you’ve spent an entire lifetime feeling somehow different, outside the realm of everyone else on the planet, finding out that there is a title to what you’ve been experiencing can often be a relief. It took me months to do any research on it, as I have layers of diagnosis (OCD, dissociative disorder, chronic depression with low-level depression on top of it, and panic disorder with agoraphobia rounding out the list) and other symptoms were more prevalent at the time. But as soon as I began looking into it, I realized that it pretty much fit me to a T. I have always had problems identifying and validating myself without comparing myself to others or becoming reliant on others’ opinions or seeming reactions to me to shape my views. My moods can change drastically, and they can fluctuate during the day. When I crash, I am out for awhile. I do drastic things to get attention sometimes, and nothing is ever ‘enough’: love, money, attention, insert noun here. I remember in high school, whenever I would have a crush on someone, I would first fall madly in love, memorizing everything about them in the space of a few days. I would find out where they lived, who they hung out with, where their locker was, what classes they took, and anything else I thought was relevant. Then, within a week or two, I’d be locked in my room crying because, before I had even talked to the object of my affections, I knew that they would reject me and my heart was broken.
I have been crushed by a single word from someone many, many times. I have felt my spirits soar at the kind, ego-boosting words of another. I get overwhelmed at the slightest tasks. I think other people are talking about me, and in fact, in the past, when I was well enough to hold down a full-time job, I was in constant fear of getting fired, despite getting feedback from my boss that I was one of the most invaluable employees on the team, and had been promoted to permanent status within two months of being with the firm. I have been hot and cold in relationships because of the fact that my sun rises and falls with the other person’s words, actions and, more often than not, body language and things they DON’T say or do. Multiply that by however many people happen to be my life at a given time (needless to say, there were never very many) and it all adds up to a long haul. And then there’s the substance abuse I have engaged in to medicate the more unbearable symptoms: alcohol, drugs, sex, food, and impulsive overspending. I have been on a rollercoaster-merry-go-round most of my life between the symptoms and trying to medicate them.
Ron was diagnosed when he was 38. At the time, he rejected the diagnosis because he felt it made him more identifiable and took away aspects of himself that he found unique. Ron recalls engaging in self-defeating and self-destructive behavior which ultimately became enmeshed with the way he viewed himself and had a direct influence on how he interacted with others. BPD, in his experience, also played a large role in other problems like substance abuse and sexual promiscuity and emotional promiscuity (a term he’s recently heard and identifies a lot with). Ron eventually came to embrace his diagnosis because he felt that to continue rejecting it would be tantamount to accepting a life without hope of recovery, happiness, or hope. It has also helped him to connect with others who share a similar journey and to find support.
Jess was diagnosed with BPD at the age of 30 and remembers being confused about what it was a ‘borderline’ between. She was not put off by having been given a ‘label’. To her, it meant that there was something she could relate to, since she always felt there was something ‘wrong’ with her, and had used things like drugs and alcohol to cope with her experience. She would also engage in abusive relationships and inflict harm by burning herself to, as she puts it, give herself a reason to feel the way that she did, since she couldn’t figure out why she felt that way.
When Jess received her diagnosis, it opened her up to options for treatment and ways to cope with day-to-day life in a way that is increasingly less self-destructive. It is still an ongoing struggle, but she now has a framework for her experience that encompasses a broader community and gives her something to connect to.
Sam was in group therapy the day that it was mentioned to her matter-of-factly that she was Borderline, an experience that didn’t sit well with her. Accepting the diagnosis has been a process for her, as she had done some work in a homeless shelter that had given her the opportunity to form negative stigma associated with BPD and people who have it and thus carried that over into her own experience. She had been told in the past that she had Post Traumatic Stress Disorder and clinical depression, and felt that those were more compassionate labels. From a young age, long before being diagnosed with BPD, she always felt ‘different’; she had trouble fitting in and always suffered from low self-esteem. Sam felt as though everyone had received a handbook on how to do life and she hadn’t received a copy. She grew up in a home where alcoholism and chaos were present and began drinking at the age of twelve.
As Sam got older and tried to find help, she was told that what she felt was a result of being an ‘adult child of an alcoholic’ or an alcoholic herself. Although she learned a lot from reading and identifying with these labels, they always seemed incomplete, and she still felt a piece of the puzzle was missing.
These folks each identify with having difficulty in relationships, and that that is an area that they still struggle in to some degree. Ron shares that the most useful thing that he can receive from others is to be treated like everyone else, with the same behavioral expectations put on him as would be expected of anyone else, as he feels that he doesn’t deserve any ‘special treatment’ for having the diagnosis and that, in fact, it can be counterproductive to learning how to live with his symptoms without acting out. Sam finds it helpful to have people in her life who support her and can listen to her without judging, and also have compassion when she is going through a rough patch. Unsurprisingly, it is generally not helpful to be told to ‘get over it’ or to ‘deal with it’ or that it’s ‘no big deal’ and ‘just cheer up’. Also, as Ron mentions, sometimes it is best, when dealing with other people and experiencing high emotions, to excuse yourself from the situation and walk away until you are able to approach it from even ground, so to speak. It can minimize the potential of saying or doing something you may regret in the not-so-distant future, and having to go back and make amends or else be triggered to drop the person from your life because you are too ashamed to deal with what happened.
Of the few people interviewed for this article, there are mixed reports on what the process for seeking treatment has been like. In my own case, I can say that it has been a long (two years without anything that’s been truly helpful in the medical field), often painful, usually lonely process. I have had to improvise a lot, and just do basic things to keep myself safe when it gets too much to handle, like tune out with books, movies, or even computer solitaire (it keeps my mind busy). I struggle with disordered eating, and generally lapse back into it when things get really rough and stay that way for prolonged periods of time without relief, but I have managed to stay away from drugs and alcohol for over five years. I haven’t cut in about eight years, and it’s another pattern I am trying desperately to avoid, as I remember the downward spiral I got caught up in last time. One thing that has really, really helped me is seeking out online and real-time supports for people who are and have been where I am. I lucked out and was connected with someone who has struggled for seven years or so, also unable to receive much help. Being able to meet in person or talk on the phone has been one of a few lifelines I have had outside of the realm of the medical profession.
I realize that this isn’t presenting a very optimistic view of life with Borderline Personality Disorder. The only treatment that is associated with the diagnosis is DBT, or dialectical behavioral therapy, but it can be difficult to get into groups or to find someone who is a trained DBT therapist without shelling out tons of cash. Also, professionals and laypeople alike seem to balk at BPD. I’m not really sure why this is, to be honest. I too have heard warnings and nightmare stories about ‘encounters’ with borderlines, and the internet is filled with them: people’s traumatic recollections of what it is like to live with someone so ‘unstable’, how it controls one’s life, etc. I am not discounting this fact, nor am I condoning abusive actions on anyone’s behalf. But the diagnosis is so misunderstood and untreated that it’s hard to make sense out of it all, whether you have been given the diagnosis or are in relationship with, affected by, or treating people who have it. Being open to hearing someone as they relate their experience (regardless of what ‘side’ they are on) can be a profound tool in recovery, as it bridges the gap between individuals and unites through common threads, especially since, even within the demographic of people diagnosed with BPD, the actual story varies from person to person. It is important to educate each other so that we can build safe spaces for all people to thrive.
The first book I read on BPD was ‘The Buddha and the Borderline: My Recovery From Borderline Personality Disorder Through Dialectical Behavioral Therapy, Buddhism and Online Dating’ and it really helped me. Not only could I relate to what the author, Kiera Van Gelder, had gone through, but it inspired me that I could advocate for myself and others as I was navigating my own recovery path. Reading is encouraged in the discovery process; it can be overwhelming to learn of a new diagnosis, especially one with so much stigma attached to it. Ron suggests reading as much as folks can get their hands on, whether or not they agree with what is being said, as it will help to form a more educated opinion and approach in living with the diagnosis. Something that Jess finds helpful is to not ‘freak out’; everyone has a different path, she says, and it’s important to honor your path and take it as it is, and try not to get discouraged. I find this true in my own journey as well. My life has changed drastically in the last two years but I can honestly say that, if it hadn’t been for the diagnosis, I would not be the person I am today and, while I struggle with fear and other things daily, I am also able to experience a greater degree of compassion, patience, and empathy for others, whether or not they are living with mental illness. Living with BPD and having the frustrating experience of lack of available resources has made me stronger and more open, something I wouldn’t change if given the opportunity.
Sam encourages folks in a similar vein: self-compassion, ‘never give up on yourself’, and reflect honestly on what your hopes, dreams and goals are, and how you can move towards them in a way that feels safe and authentic to you. All of us seem to unanimous in believing it is vital to have a doctor, psychiatrist or therapist who believes in you, who supports you, and who isn’t afraid to invest in you, and to be as honest as you can with that person about absolutely everything, no matter how sick or weird or unreal you think it is, so that they can actually help you. A lot of this may seem like it is easier said than done, but one of the ideas behind DBT and other behavioral therapies and recovery approaches is that the more we practice something, the more of a habit it becomes, so that eventually it will become natural and replace the thoughts, actions or reactions that are no longer serving us.
Borderline Personality Disorder can isolate us. It can alienate others. It can hurt people we are in relationships with, and it most definitely hurts us. Some of my greatest work these last couple of years has been in forming solidarity with others who have mental health issues, whether or not that is necessarily BPD (although it is important to also have people you can closely relate to, symptom-wise), and being vocal about my experience. This approach is not for everyone, and certainly there are different levels of disclosure for different folks, based on a person’s work life, home life, and public or social life. For me, I have found it an important part of my journey to speak up, to come out of the closet, so to speak, and put a face to this disorder and the others that I live with on a daily basis. Always be true to yourself and do what feels safe, and if you’re unsure, check with other people. There is no ‘right’ or ‘wrong’ way to do anything. It may be helpful to be aware of not only what you are attempting to change or examine about yourself, but also where you would like to be. What is the picture you have of yourself? What are your hopes, dreams and goals for your mental health? It is a matter of what works for you, and in the often long and tiring process of reshaping our lives, beliefs, values and behaviors, it is vital to have a center to come back to.
It doesn’t hurt to take care of yourself physically during this time, and to really pay attention to the needs of your body: are you hungry? Do you need rest? Do you have extra energy or are you feeling sluggish? The answer here may be a walk, run, or some other physical activity. Developing a connection to your body can help you get out of your head and the endless cycle of rumination (going over the same things over and over, obsessing about what you could/should/would have said/done/felt, if only…). I find writing fiction, poetry, blogs, or even articles (like this one) helps me channel and explore my darker emotions, thoughts and tendencies. Journaling is a big help as well. Artistic expression has been a key part of my recovery, and it has helped me process and integrate many things that I am unable to access on any other level. What is a safe way in which you can explore issues and themes in your life?
Regardless of your approach to recovery, there is help to be found. Admittedly, this is a path that takes some work and motivation, and you may have to be creative about where you seek support or inspiration to keep you on your path. Be gentle with yourself as you walk the road of self-discovery, and remember that there is no perfect way to recover, or to ‘be’. Everybody’s journey will look different. You may also find yourself needing or wanting to develop some patience with other people -and/or a thick skin – when it comes to disclosing your diagnosis or dealing with your symptoms. But setbacks are just that: setbacks. They are not the be all end all, and they do not mean that you are a failure. One step forward, two steps back…
Great article; thank you for writing it and for being open about your experiences!
I’m on my own BPD recovery journey too…and several things you mentioned stood out for me, and that I actually found humours because I was thinking, ‘Yep, sounds like me.” I can very much relate to the ‘constant fear of getting fired’. I was smiling thinkng about my own paranoia, despite being told that I am doing great work at my company.
Another relational moment: Sam’s thoughts that ‘everyone had received a handbook on how to do life and she hadn’t received a copy’. Perfect phrasing for how I sometimes feel, which I think is tied up in my assumptions that there is a wrong/right way to do life, that everyone seems to have their life together, copes much better than myself, etc.
Again, thanks for writing! As you allude to, hope is always there, and will sustain us through the rought patches on our way to *our* version of mental wellness.
Thank you for being so honest! It is a daily struggle to cope, to be honest with myself. I have just been diagnosed BPD, and I am still not aware of this disease? I have been told for over 14 years I am a rapid cycling bipolar type 1 person. The meds never worked, or made me more ill, and side effects from hell. But, I have felt this way my ENTIRE life, and suffered much abuse from it as well as inflicting abuse on others that didn’t deserve it. These stories resonate with me, very deeply. I hope I can find the right help. I have many worries, and I still don’t know how to take care of myself. I am a work in progress like you, our life tapistries are being weaved even as I write. I have a brighter shade in mine now, thanks to your honesty and bravery. Thank you for that. Take care and take time to yourself.