Adversity to Advocacy in the PPD/TMS Movement

Last month, I sent a newsletter out to a bunch of PPD practitioners that contained a brief article about how peers can turn their chronic pain adversity into positive advocacy. Hearing Annie share her experience in the Alan Gordon event reminded me of this article and of the power we can all gain from turning our adversity into advocacy. Personally, I have found tremendous empowerment and healing just through being involved with this community. Anyways, I thought I would share this little article with you all. It really shows how I see our organization moving forward in the future.


Adversity to Advocacy in the PPD/TMS Movement

I’d like to share something that I learned about myself and about our movement over the last year or so.

Since last fall the PPD/TMS Peer Network has held a weekly drop-in chat room where individuals can receive support from peers who have recovered from PPD. While the meetings last just one hour once a week, a PPD therapist has confirmed to me that their patients have attended and found the meetings very helpful in realizing that they aren’t crazy or alone.

The Peer Network started these meetings as a form of outreach to help other people, but what has been fascinating to me is that in addition to helping others, both I and the other moderators have learned a tremendous amount about ourselves. While I have been out of pain for a while, I think that PPD can be a signal that there is other work to do, and I find myself more enthusiastic than ever to do this work. My girlfriend has observed these changes and sent me a link to an interview on NPR’s Here and Now with Robin Young about San Francisco Newscaster, Jeff Bell, who is an OCD patient turned advocate.

After overcoming his OCD, Jeff Bell wrote a book about his experience and started an organization called Adversity to Advocacy or A2A. A2A is entirely peer led in that its volunteers have all suffered from the “adversity” that their “advocacy” relates to. Much like the Peer Network, it mentors people challenged by adversity on how to become advocates and help other people in similar conditions. In the interview Bell discusses the positive effects volunteering as an advocate can have on a patient/peer’s recovery and the unique role peer organizations play in turning adversity to advocacy. Bell says, “As I shared my story, I found I was becoming stronger and stronger, and the people I was networking with had this common thread.”

It struck me how much this resonated with my own experiences. A2A serves as a terrific example of what peer organizations bring to the table. Their mission and model is defined in the following statement: “By being of service to others with adversities similar to our own, we apply our empathy in a way that provides a powerful sense of purpose and fuels our resilience.”

As a completely peer led organization, A2A embodies the very activity that it promotes. By giving peers an important voice, A2A is empowering the people it helps. This is very similar to what the PPD/TMS Peer Network seeks to accomplish. In PPD it is the person with PPD’s courage to accept the diagnosis or open themselves up to psychotherapy that is they key determinant of a successful treatment. To insist that we need a practitioner led organization to lead us in our advocacy fundamentally misunderstands the “powerful sense of purpose [that] fuels our resilience,” as described in A2A’s model, above.

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As Peers, we take pride in the deep sense of ownership we feel in what we are creating, and this pride can be therapeutic. This idea is represented in the Peer Network through the composition of our board and through the vitally important words, “Peer Network.” Most of us don’t see ourselves as patients, but rather as peers. To turn us into patients is disempowering and subtly suggests, by the very vocabulary, that we only exists in relation to an omnipotent MD or therapist. This deprives us of a sense of self-determination that can be so therapeutic in our long term recoveries.

Through the composition of it’s board and it’s well defined identity, the PTPN authentically represents all peers with PPD and in so doing we empower people by giving them a sense of ownership in the organization. With this clear identity, we can best support the other practitioners, researchers, authors and nonprofits that are helping to create this movement.

This is, in part, the reason Doug Lynch, the PR consultant who helped develop the term PPD, recommended having a two organization model, where one focuses on practitioners and the other serves as a clearly defined grassroots peer organization. By being the peer led organization, the PTPN is playing a crucial role in the overall PPD movement, and have the ability to truly empower people to overcome their symptoms and encourage others to try the approach.

One of the most gratifying parts of my job with the PTPN is seeing someone go from being in pain to helping others recover. The peer network has become very good at integrating new people into the organization. We are developing clear job descriptions for volunteers and have extensive training materials and mentors for new comers.

If you know of a patient who you feel would benefit from gaining the self-esteem by turning their adversity into advocacy, through the assistance of a truly peer/patient identified and led organization, feel free to give them my email or have them contact me through our forum. It is always a pleasure to speak with potential new advocates and help them learn about what they can do to raise awareness of this debilitating but eminently treatable condition.