Why therapy helps me deal with my sister’s disabilities

Author’s note: I actually have more to say on the subject of psychotherapy and having a sib with disabilities, in terms of some stories from my life and things I’ve seen other people experience, but this was just too important to hold back until that post is done.

I’ve said this before, but I want to reiterate: I was just shy of three years old when my sister was born, and the extent of her medical problems wasn’t clear until months or years after her birth. (Her epilepsy didn’t show up immediately, for instance.) Life with her is all I know. And for years and years I never noticed or cared that the rest of the world wasn’t like my family; nothing about Lily’s medical conditions felt like a problem. If anything, I too often felt somewhat smug about my sense of perspective or ability/tendency to think about other people more carefully than my peers, but that was about the only way I felt my sister’s differences to have impacted me.

Until I got to my late teens, that is – around the time I finished high school and started college. There was no defining moment. I just started noticing, as my world opened up, that I related to it in a way that many of my peers did not, and that I had some perspectives that made me feel unusual. I was uptight and fairly conservative, in a lot of ways, not really a risk-taker. At some point I started seeing a therapist (more on that later); I’ve been in and out of therapy since college. Recently, I was struggling a lot, so I found a new therapist, and I rather like her so far. Here’s what she said last week that shook my world: in her opinion, most of the issues I’ve named as concerns – the symptoms and triggers of anxiety and depression – likely stem from decisions I made as a child about how my life related to Lily’s – that solidified in my brain into a sense of what it means to be a good person and an adult, but in the way I perceived and described those as a child.

This might seem obvious to an outside observer, but trust me: nobody had ever helped me to see this so clearly. I was three years old, and it makes so much sense to me now that I chose starting then, when I was a toddler, a preschooler, a kindergarten student…I chose to see Lily’s needs as paramount, because Mommy and Daddy Were Helping Lily and It Was Important, and since it was such a big deal, I also began to treat doctors as people to be seen often and their offices as not-fun places. So my sense of maturity now, with its feeling that my life is not my own? Or my discomfort with doctors? Those ideas reflect the decisions I made or analyses I performed as a tiny child, lacking an adult sense of self and purpose, let alone perspective. (Moving towards a fully adult maturity is the goal of my continuing treatment.)

It was a huge relief when my therapist said this. I could almost physically feel elements of my brain falling or sliding into place – puzzle pieces coalescing into a picture that finally made sense. In my most recent session, she emphasized that being an adult is not some universal threshold: while I may have experienced some developmental delays, I have developed a lot of adult skills. Which, you know, I think the PhD should really have made me appreciate…

On a related note: in talking with another friend who has a SWD, we both felt like it’s a strange situation: your sib’s disabilities often have an impact on you that makes you grow up fast, but it’s almost a false maturity – an echo of how grown-ups appear to be, without the life experience or knowledge to make this more than a mask. Maybe teachers and coaches and even our parents see us as these mature kids and might not understand that it’s an imitation, and that maybe we need more help filling out the substance internally than anyone could guess. Seriously: I’ve been told that I’m very mature for almost as long as I can remember. And I’ve been feeling immature for most of that time.

I have felt so miserable recently, feeling like I’ve walked out on my family because I had the audacity to take a job thousands of miles away from them, and I don’t much feel like talking on the phone with them right now. Despite the fact that the economy is tough now and this really is the perfect job for me, and when I’m not fighting my anxiety, I love my job: I’m doing interesting biology. And the fact that I have friends here, new and old, and it’s normal for them to fill my evenings and weekends. It’s okay for me to have my own life and goals and priorities, and it doesn’t make me less of a responsible adult if I need to take care of myself for awhile. Especially if I am working on building an adult concept of life, and am finally identifying – and updating – juvenile concepts I put into place to keep up with the challenges of life with Lily.

It has been a liberating experience.

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