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.
One of the things that made a huge difference I think for her was another friend who I will call Melissa. Melissa had Jennifer over to spend the night before her surgery, helping her prepare (and I joined them for dinner). She stayed with Jennifer during admission and spoke to all her nurses and doctors in the hospital. She advocated with Jennifer, helping her express what she needed – not for her but with her.
I had a lot of fears about what might happen. Jennifer’s surgery was going to be at an inner city hospital known for being very busy, and very short staffed. I worried that the staff there would be impatient and unwilling to treat Jennifer with the care she (and all of us) deserves.
I was wrong.
Not only did the staff listen to Jennifer, they went out of their way and allowed Melissa in the Operating Room (in scrubs) until she was fully unconscious and allowed Melissa to be at Jennifer’s side (in scrubs) as she came out of anesthesia. They wrote a long series of notes that went up to the post-surgical floor so that the nurses were ready and understood her needs when Jennifer arrived in her room.
The nurses went out of their way to find a fan because she was hot. They described everything they were going to do before they did it and then asked if it was ok, if she was ready. They forced someone to unlock the kitchen because she had missed dinner. They allowed us to stay – even welcoming her sister to stay overnight in Jennifer’s room.
Another thing that may have been helpful for Jennifer was the fact that I had recently gone through something similar. I could help her prepare for what she might face, help her prepare to ask questions and think through what she needed. Once again the power of the lived experience – the power of peer support may have made a difference.
So all of this made me think: What are we doing to help our healthcare system to listen and be flexible, to take people for who and what they are and respond to their unique needs? Jennifer had Melissa, me and her sister. She had a sensitive group of doctors and nurses in the midst of a busy hospital – which is frankly not always the case.
And it also made me wonder what can we be doing better as people with the lived experience to help each other through physical health challenges? There are several innovative programs out there like Larry Fricks’ Whole Heath Action Management (WHAM) program that helps peer coaches prepare for and lead groups focusing on the integration of health and mental health. WHAM has been picked up the SAMSHA/HRSA. There is Peggy Swarbrick’s Wellness Institute, a coaching program and more that focuses on wellness for people with mental health issues that SAMHSA has also embraced. But there is so much more we need to do. How are we helping providers understand what we (consumers) need? How are we helping our loved ones friends and peers provide support when we need it? How are we preparing each other to face some of these healthcare issues – and, of course to do what we need to stay healthy?