When I was in my early twenties I was tired of falling into depression, anxiety and exhaustion over and over again. My whole life had been a bit of a rollercoaster and I managed to get myself diagnosed with emotionally unstable personality disorder (also known as borderline personality disorder) and asked for Dialectical Behavior Therapy (DBT), which I actually got. To my surprise, it worked better than anything I had tried so far. My life improved in many ways and even though the psychologists and doctors claimed that this kind of remarkable progress was unusual nobody ever questioned why. Nobody ever questioned why the most frequent emotion I dealt with in my home assignments was fatigue. Fatigue isn’t considered an emotion in this context but fatigue and the lack of mental (and sometimes physical) energy was without any hesitation what was bothering me the most.
After I had finished my treatment I was considered cured. I didn’t fulfill the criteria for the diagnosis anymore and even though the fatigue was really bothering me, that wasn’t a problem according to the psychologists. I was told that everybody was tired and that I expected to have an unrealistic amount of energy.
During my year of DBT I learned a lot of very hands-on strategies for different situations in life and a sort of inner list of rules for social situations. It puzzled me because for a while I seemed to be almost “normal”. Now I was behaving the way I should. Now I was a real human being, a complete one. Not broken or faulty as I used to be. At this point I didn’t think at all about autism and I didn’t at all connect this experience to the possibility of me being autistic. Instead, I felt ashamed for myself and who I had been before DBT. I could never pinpoint exactly why. I didn’t have the knowledge nor the words to understand it. Today I phrase it as “what came automatic to neurotypical people didn’t come automatic to me”.
Many people will probably consider this a success story. I finally got help and learned skills necessary to live a happy life with meaningful social relationships. The thing is though, that’s not true.
Because I didn’t understand why I had needed to learn what I learned in therapy, I never understood that for people who can do certain things automatically it requires way less mental energy than for me who have to think through every step of a conversation all the time. I didn’t realize that I had a disability and needed strategies, adjustments, accessibility and different kinds of tools to not exhaust myself. Instead, the shame of my past personality made me try to erase it. I worked so hard on being the new, normal me with all my new skills that I had a new breakdown. I passed for normal so hard that I passed myself into a collapse. Because the fatigue only got worse.
I also missed finding other people with similar disabilities for support and I missed the possibility of an identity and a context. I missed the critical perspective that I need to ask myself how much I should adjust my behavior to the norm just to make life easier for other people.
When I finally got an assessment for ADHD almost ten years later, autism was overlooked because I had learned to come across as way too allistic. The skills I had learned in DBT, combined with the shame that had made me study peoples body language etc. made the doctor think that my body language was exceptionally coherent and that there were no signs of autism in our first meeting. The screening and assessment tools were by no means good enough. I passed.
I find it both sad and almost ironic that DBT both helped me to better skills in many areas of life (some of the coping skills for dealing with anxiety for instance worked well for me) but the social skills were practised to perfection which made me push myself into exhaustion again, but now also covering all signs of autism. On the surface it can look like learning new skills is an improvement and sometimes it is. However, sometimes it’s just masking. In this case, the behavioral changes in me turned out to harm me deeply.