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Life at the intersection of health and mental health: The power of peer support

January 6, 2014
by Sue Bergeson
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A few of my friends live with Asperger’s, a condition some say is on the autism spectrum. One of these friends – I will call her Jennifer – was recently hospitalized for a physical health issue and caused me to think about the intersection of health and mental health in a new way.

By any measure – Asperger’s or no Asperger’s – Jennifer is a successful person. She has a meaningful job that she seems to be very good at and that she is passionate about; she has her own apartment; and she has several friends and good relationships with her family. When I first see her any time we meet, her face just lights up and she reflects this amazing love and joy.  

But make no mistake – life is filled with challenges for Jennifer (not her real name of course).

After greeting me, she will often not meet my eyes again. She will often mumble and I sometimes I do not immediately understand her sense of humor or her thought process. Her employer does not know her diagnosis (and we council her not to reveal it knowing that it will likely not be received well due to stigma) and he criticizes her lack of social engagement with her coworkers. According to the National Institute of Health, “People with Asperger do not withdraw from the world in the way that people with an autistic disorder do. They will often approach other people. However, their problems with speech and language in a social setting often lead to isolation.”  So her supervisor’s criticism is frustrating and difficult for her to address.

When Jennifer gets upset she can scratch herself in her worry. Since her communication can sometimes be difficult, especially if she is upset, this has led to some difficult situations. On at least one occasion this has caused shortsighted practitioners to force her into a psychiatric hospital which ended up 1) not addressing what she went to them for help with at all,  2) extremely traumatic for her and 3) increasing her anxiety about 20,000 times. Since she is not always clear when she is upset, she can feel even more vulnerable as providers become impatient and then start ignoring what she is trying to tell them.

Jennifer is also very sensitive to touch. She is sensitive to external stimulation like sounds, hot or cool air and to changes in her routine especially when she is not in control of these changes.

Now stop for a minute and once again see Jennifer through my eyes: She has a million dollar smile, she is funny, she is kind, she is incredibly intelligent, and she is passionate about a cause and spends her time helping others. When you relax into a conversation with her, you soon learn how really brilliant she is at what she does, how insightful she is and how really committed and creative she is in the face of multiple challenges.

And okay, yeah, she has these other things she deals with that can make it hard for her.

Recently Jennifer had to have some surgery that was similar to one of the ones I had. Think about that for a minute – She would not be in control, people would be touching her, she would be a in a place that is loud, often too hot and too cold and she would experience pain. I have so much respect for her courage in going through with the surgery. So many people with fewer challenges would not have done so well.

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Sue Bergeson

Serves as the Vice President of Consumer and Family Affairs for a large managed care company

@@BergesonSue

Sue Bergeson is a behavioral health consumer and a family member of behavioral health consumers...