Harris Center Research
The MGH Longitudinal Study: A Study of Recovery and Outcome
Recently, one of our interviewees wrote us a letter
describing how participating in our Longitudinal Study has impacted her life:
Well I hope it is not too late to give you a little word about what the study has meant for me. I want you all to know that honestly it was the first time anyone had seriously wanted to know how I felt - not in a judging or blaming way ("Why are you doing this?"), but rather, what is your experience of this. It was the first time I was able to speak openly and candidly about my feelings about myself and my life and my truly complicated and devastatingly troubled relationship with eating.
I remember in the first interview the researcher asked me what my goal(s) were. It had been a long time since I'd had anything resembling what I considered goals - career or family aspirations. I thought about the question and what I really really desired for myself and answered: My goal is to be at peace. That was true! All I felt was anxiety and turmoil and self-rejection and I really desired freedom and rest from that. I said: I guess that's kind of a dumb goal. And the researcher said: I think that's a good goal. And that was such an affirmation....I never forgot it. And through the years of follow-up interviews, I have always felt like the research team really cares about me and my recovery and are very supportive and happy for me when I am doing well, and not judgmental when I'm not.
Another thing about this study that I value SO much is that the research really wants to know what this disease is actually about. I can't tell you how devalued I felt when I saw magazines with cover stories about "Dying to be thin!"...It was such a superficial treatment of such a complicated issue. My eating disorder was never about trying to look like a waifish model or slim actress. It was a complicated, spiritual, emotional, moral battle that was played out in the physical realm. It was more about externalizing a vast and painful hungry emptiness than about squeezing into a pair of tiny jeans. Seriously - it is pretty insulting to take a tragic painful anguished condition and basically ascribe it to vanity. Very demeaning. Which is why this study is so so important to me. It actually asks real people who suffer from this to describe in detail their experience and it tracks them over time, a long time, to get at some truths and not just toss off pop-psychology clichés about it.
I know I am one of the lucky ones. Some of my co-participants have died from this, some are still really struggling. I suffered with my ED for about 15 years. It became such a part of me it was hard to separate me from it. But being in the study was the first real clue I had that this was not who I was - that recovery was possible. It took a long time, but I really believe that participation in the study was the first step down that long path of healing.
Thanks to all of you and love to doctor H,
This page was posted on June 30, 2011.