Life at the intersection of health and mental health: When is peer support not peer support?

It’s been interesting looking at peer support from two different systems as a consumer of mental health series and as a consumer of health services as I deal with the two difference forms of cancer discovered in my body in July 2013.

 I know a lot of about peer support within behavioral health. Thanks to peer leader Larry Fricks I had the opportunity to be trained as a certified peer specialist and then also tapped to train others. I have been able to bring paid peer support into the managed care system where I work with much support from many coworkers. When I was at DBSA, I helped nurture the chapter and support groups network – again with many talented people such as Lisa Goodale and Ingrid Deetz in the lead. 

I’ve read Sherry Mead’s really insightful work on intentional peer support and have been a part of many conversations around this work. I’ve struggled with the issues around paid and volunteer peer positions, career paths, supervision of peers, and the value of online and phone based support groups. I’ve tried to think and talk through the difference between peer specialists, support groups and group therapy as this world of peer support continues to evolve. There is a lot of consider. But that’s not really what I want to blog about today.

These blogs are about my experiences as I intersect with both health and mental health systems. During my journey, I have found some wonderful things that have made me think and some not so great things that have also challenged me as I considered peer support.

First the great things: I have been surrounded by opportunities to receive peer support for my cancer journey. I have received newsletters and e-mails that post the times and locations of many support groups. I have been given three and a half pounds of written materials, access to smart phone apps, even videos of courage and support. I wish it were not so hard for consumers of mental health services to get this kind of access for behavioral healthcare peer support.

 I was given a referral from my hospital to receive a phone call from a breast cancer survivor – a wonderful form of peer support. I wish we routinely offered this kind of service to consumers of behavioral health services after a diagnosis, during treatment, after hospitalization.

On the other hand, I was also given several nurse navigators in different systems – none of who were peers and not one of which who really did anything for me. Often when I talk about peer support, people in healthcare say, “Oh, you mean navigators.”  Nope. I was also forced to listen to well-meaning cancer nurses, not peers, tell me how to deal with my depression – which was predictably getting worse as chemo went on. Since I know a lot more about both depression (past CEO of DBSA, remember?) and strategies for coping than they do, it was more than frustrating to listen to these kind hearted people tell me to think happy thoughts and get up and walk around more. One nurse even told me she could not take a certain medication because it made her “moody” so “she understood.” Yeah, that’s what I am dealing with here, being “moody.” Not. Eventually I learned to stop talking and provided almost no information about that part of my symptom suite – and sadly a lot of other things, too. For example, it’s not a great idea to tell a nurse I am getting little sleep because they will ask me why I am not talking my sleeping pills. Trust me, having sleeping pills around the house when you are severely depressed is not a good idea. So this was also unreported after a bit because it was so frustrating and really, what could they do? Besides yell at me or give me really bad advice. It’s not their fault, these well-meaning nurses’ training and “help” was just so bad. Here is a place where peer support might be a good idea – or at least could use some better training.

Recently I have had some other not so great experiences that made me think about times when peer support is used, perhaps to position something that was just easier for the staff in my chemotherapist’s office. It seems to me to be a slippery slide, a way to take a popular notion (peer support) and twist it into something that feeds an existing system rather than serve the needs of the individual in treatment. 

Let me explain further. If you have not been through Chemotherapy, it goes like this: You sit in a chair, you are hooked up to an IV, the IV drip duration and number of different bags of chemicals is determined by your doctor’s treatment plan. Mine takes about three hours each time. The first time I was in a room with just my sister. I was beyond scared, not knowing what to expect. I was very lucky, had the best possible nurse – a breast cancer survivor who told me quite bluntly that the other nurses think they know what it’s like to have this disease and they do not – there are a lot of things you simply do not know until you have lived it.  She was great and practical and really, really helpful. Sadly I never saw her again.

I also never saw that private room again. Next time I was tossed into a large U-shaped room with nine chemo chairs filled with people like me – pallid skin, no hair, aching bones, the need to be close to a bathroom – and I had a range of no-nonsense nurses (some who were kind, some who were brusque) who rushed in to place or replace an IV.  Now, I am an introvert. It is physically painful for me to have to be in a room of strangers. I literally feel the energy draining out of me, and trust me I have little to spare at this point in my life. I literally feel a kind of pain on my skin being forced in close proximity with these strangers. I ask for privacy of some kind and am told “nonsense, you can all support each other.”  I get the message: They are busy; their rooms are full, I should be thankful to get a space. So I endure literally counting off the minutes, using all my coping strategies learned through my years in behavioral health to survive this form of “peer support.” Forced peer support is not big on my list.

So If this is supposed to be peer support, why is there no one there to facilitate any good group interaction, no rules of the road to help facilitate our interaction, no set format to help us share and receive encouragement and support? Yes, I have the skills and knowledge to do this but I have no desire at this very scary and low point in my life to connect with others who are also in pain – because I know I will be the one giving and they will latch on to me for anything I’ve got.  And I have nothing. I endure the next three hours.

My next chemo is even worse. I am in an even larger room chock full of people all of whom, it seems to me, are close to death. This time, there are several people who deal with their anxiety and fear by talking in a kind of manic way to anyone who will listen. It feels like knives in my ears. Then several of the people get into an offensive political rant with each other. I turn up the sound in my earphones (I thought to bring my iPad with my music this time) until my ears hurt. After three hours when I am leaving, one brave nurse says to the entire room, “Do you know what all the nurses are saying?” Then, she explains, “That this room is offensive and abusive. You need to stop talking about politics and allow the others in the room to relax.” 

Wish she had been in three hours earlier. Wish any of the other nurses has been brave enough to deal with this. Wish I had felt strong enough to deal with the abusive people. I continue to be weak and sick going in and had no energy for the abuse I would receive from those stronger and meaner people. Peer support should be by choice, facilitated, and led by someone with training and skills. Peer support is not throwing people in a room hoping they support each other and expecting them to manage if a few people are abusive.

 “Peer support” is  not an excuse to put people going thought a difficult and intimate experience (any time I am having chemicals pumped through my body to keep death away seems pretty intimate to me) into a room with each other so they can offer each other “peer support.”  Placing us all in these impersonal and horrifying rooms is, on the other hand, an easy way for the nurses to come in and deal with a bunch of people at one time and relying on the other patients in the room to yell if something seems to be going wrong. Peer support should not be forced, it should be facilitated by someone trained and placed in that role and it should not be used as an excuse to do something that makes the lives of the staff easier. 

So all this has made me stop and think, what are we doing in behavioral health that mimics this? Are there times we force peer support? Are there times we expect peer support to generate naturally without a trained facilitator in place to help a group succeed? Are there times “peer support’ becomes a way to position something that just makes the lives of those treating us easier? I hope not. But my antenna is definitely up.