It’s time for the Eating Disorder conference world to welcome sufferers

It’s time for the Eating Disorder conference world to welcome sufferers

Hot on the heels of  Sufferers – an untapped resource in the field of eating disorders comes this insightful and stirring post from Shannon Cutts, Executive Director, MentorCONNECT:

Thank you for inviting me to weigh in on what may be one of the most difficult issues remaining in the eating disorders field. It has long been my dream to see more sufferers and recovered persons at eating disorders conferences. Outside of a handful of well-known recovered voices who have chosen to make public their own recovery stories for the benefit of professionals and patients alike, finding a sufferer at a conference often feels like trying to find an ice cube at the equator. I have in the past felt lonely when attending or presenting at conferences as a recovered person, and have wished for more productive collaboration and interaction between suffering patients and treating professionals.

However, as a frequent conference attendee/presenter and a recovered person myself, I can also see both sides. For instance, I have often noticed while attending conferences that professionals (perhaps not realizing I am amongst them) will openly express a certain relief to have a safe place where they can decompress, express frustrations and fears, share best practices and enjoy the nourishing company of equals in the eating disorders field. Here, free from patients’ watchful eyes, they can talk, eat, drink and learn freely – turning the conference experience into a mini-vacation of sorts as well as an educational opportunity. Perhaps having “patient free” conferences keeps the burnout factor lower than it might otherwise be, and even offers professionals a useful way to recharge and reenergize before they return to their practices.

Ask us directly – what we think, want and need

However, even in this friendly and encouraging atmosphere I have frequently overhead professionals refer to us – the ones with the eating disorders – as “that population” or “the patients” – in a way that felt somehow shaming (or at the very least, dismissive). I have sat in rooms as the sole recovered representative, listening to professionals debating with each other over what their clients want or need from them, wondering how much more easily their questions might be answered if they would just ask sufferers directly what we think, what we want and what we need.

‘Hear and value our voice’

I know sufferers and recovered persons have a lot to say and a lot to share on this subject. I know this because since I founded MentorCONNECT in 2009, we have welcomed 3000+ recovering and recovered people from 16 countries, males and females, ages 14 to 70+, of all eating disorders diagnoses and backgrounds. We have read their stories and dialogued with them about what is and isn’t working in their recovery and within their treatment teams. In a nutshell, what our members – sufferers – patients – clients – recovering people – tell us they need from the greater eating disorders community is:

• Respect.
• A voice that is heard and valued.
• To be trusted – maybe not in our eating disorders recovery at times, but certainly as human beings.
• To trust our treatment teams to help us heal, free from tactics that may employ blame, shame or equally toxic tools to explain to us just who the patient and who the professional is.
• The encouragement of hearing recovered persons’ stories – over and over again.
• Mentoring from others who have walked a mile in our shoes – whether those people are part of our professional treatment team, lay mentors, or simply others in our support groups or communities who are willing to share their experiences of successfully overcoming challenges in life and with eating disorders.
• To be dealt back in to healthy, happy, high functioning mainstream society upon our recovery, rather than facing continued distrust and marginalization from professionals and the greater lay community alike.
• An ongoing place to participate and contribute in the recovery community – outside of opting to pursue a professional career in the eating disorders field as an avenue to stay connected– and for the twin purposes of better maintaining our own recovery and also giving back in support of others as they heal (here it seems relevant to note that in 12 Step communities – which regularly report much higher abstinence and sobriety percentages than their treatment counterparts – it is believed that a sober person cannot hold on to their own recovery unless they also “give it away” by helping others to stay sober.)
• To know our struggles and triumphs mean something – are significant – can be useful to others who yet struggle and dream of recovery triumph.
• A forum where we can share openly about what we need with those who are exerting themselves each and every day to treat us and help us heal. If this happens at eating disorders conferences, so much the better.

Unhappily, here in the States and elsewhere, sufferers often experience disappointment when attempting to register to attend eating disorders conferences. Conferences are most frequently organized and orchestrated by professionals for professionals. Professionals present to professionals and learn from professionals. Having a recovered or suffering person on hand to lend their voice continues to be the exception rather than the norm.

Sponges for knowledge

In summary, the attendance (or non-attendance) of sufferers and recovered persons at conferences has long been a concern of mine, and I am grateful to you for introducing this issue for deeper contemplation and discussion. My hope is that the eating disorders personality itself may serve as the spokesperson for suffering patients to endorse their attendance at these helpful conferences. On MentorCONNECT we host free hour-long live teleconference events with treating professionals and recovered persons each month. Dr Walter Kaye, Jenni Schaefer, Carolyn Costin, Dr Kenneth Weiner, Dr.Michael Berrett, Jennifer Nardozzi, PsyD, Dena Cabrera, PsyD, and many other treating professionals have volunteered their time to present for our teleconferences and take live questions from our members. Time and again, month after month, what we have observed from our members is that those with eating disorders tend to be humble, respectful, quiet, somewhat intimidated and certainly very grateful when in the presence of treating professionals. They are sponges for knowledge and go out of their way to ensure they cause no trouble to their fellow attendees or honored presenters.

Accelerating recovery efforts

Even beyond this, there are many additional benefits to openly inviting recovering persons – sufferers and those who have healed – to attend conferences and learn. For instance, welcoming sufferers to these events would spread the wealth of knowledge about what works best in treating eating disorders much further, much faster. I have often attended a conference, workshop or seminar and wished those we serve on MentorCONNECT could have the benefit of such knowledge. And I frequently feel overwhelmed as a rare recovered representative to take what I have learned back home and share it with our membership and elsewhere.

Overcoming the fear of being misunderstood

As well, allowing sufferers to attend would showcase firsthand to the recovering community that many professionals DO truly care and understand what suffering people are going through. Right now, there is an equally wide gap between professionals who want their patients to trust them and patients who feel willing to trust. On MentorCONNECT, many of our members share that initially they don’t want to open up to their treatment teams for fear they will be misunderstood, shamed or dismissed. But after encouragement from mentors and peers who are farther along on the recovery path, many do eventually recommit to professional treatment at a much deeper level and go on to achieve lasting recovery.

Shy to seek help

Since we opened MentorCONNECT’s doors in 2009, we have welcomed nine recovering persons for every one recovered person. Our numbers have grown overall in the past few years but these percentages have not changed much since we initially launched. Many sufferers today do not even have treatment teams, let alone a lay carer who supports them. A solution at conferences, where a carer or support person is recommended, might be to confidentially connect each sufferer/registrant with the number of a member of the conference leadership team so that they have someone to reach out to if they need to during the conference. But even if this were to be offered, my hunch is that few (if any) attending sufferers would take advantage of this support. MentorCONNECT teaches us every day that most sufferers are shy to ask for help even when they seek it out and even when it is handed right to them, and often they have to be convinced and cajoled into opening up and accepting support.

It’s time to heal – together

It’s time for the eating disorders conference world to invite and welcome all sufferers and recovered persons who want to attend and learn. No professional would encourage a patient to run from what triggers them – rather, they would encourage the patient to stand and face the trigger, learn from it, and challenge it to see whether it may in fact be a great blessing in disguise. In the same way, conference organizers must be willing to practice what they prescribe and invite sufferers into their midst so that we can face our fears, learn and heal together.

With all my best,

Shannon

Executive Director, MentorCONNECT

www.mentorconnect-ed.org