reclaiming a lost identity as a carer at the NEDA Conference

Hello from Boston!

We are back home following a long-weekend in the great city of Chicago meeting eating disorder activists, professionals, carers, and those in recovery. This was our first time attending the National Eating Disorder Association’s (NEDA) conference and it certainly won’t be our last!

looking as dapper as ever for #NEDA2016
looking as dapper as ever for #NEDA2016

From a carers perspective, let’s just say, I think we should attend a conference every weekend. OJ left with a greater desire and determination to stay in recovery. I know it’s not all about the food, but let’s be honest, it is how the disease manifests. As a carer, OJ’s attitude and behaviors towards food provide me with insight regarding how she is doing. Saturday night following the conference, OJ successfully completed multiple food exposures. This was certainly a sign to me that she is continuing to fight her ED and persevering on the recovery road.

The first exposure was not only going out to dinner which we’ve only done one other time since she’s been home from residential treatment, but we also went out to eat with friends. Imagine that!

She tried a new food and shared food off of the same plate with others. This may seem like very simple things and perhaps something that others do in their life quite frequently, but I’m learning that for someone with an ED, this is often an impossible task.

Personally, I love eating off of the same plate probably more than having my own individual plate. I also believe that you should try everything at least once (unless you have a food allergy or another medical reason not to).

If you can’t tell already, OJ and I basically have the exact opposite responses to food. I have missed the OJ that is social and that can eat with other people, and I’m hopeful that this was a sign that we can do this more often. Perhaps even more significant, was that she stayed present throughout the meal. I loved having a conversation with her and not her ED.

As excited as I am for OJ’s new sense of empowerment and as important as it is to recognize, I want to be able to utilize this platform we’ve created to find ways to support me and my recovery as a carer. Balancing the focus on OJ’s recovery and my own recovery as a carer has been a challenge.

via sherbonbon

In talking with other carers this past weekend, I found that I am not alone in this balancing act. It has been difficult to help OJ in her recovery while maintaining my own identity. This loss sense of identity was common among caregivers.

At the NEDA conference, I participated in the buddy program in which I was matched with a group of fellow caregivers. We got into groups on the first day of the conference and were asked to introduce ourselves. We went around the group, but no one actually introduced themselves, rather they introduced the person for whom they are caregivers. This seemed to be a common thread seen in the other groups specifically targeted for carers. We become The Carer and not Ourself.

Just like OJ has been trying to find out who she is without her eating disorder, I am also trying to figure out who I am aside from OJ’s caregiver. This has been very difficult to tease apart since as caregivers we have to play multiple roles for our loved ones, while also trying to maintain a sense of self.

At this point, while OJ has made progress, there is no way I cannot be affected by where she is at in her own recovery. Her illness still affects our lives in nuanced ways. Time has to be specifically set aside for meal planning and shopping. Don’t get me wrong this makes both of our lives easier and less expensive, but as someone without an ED, I have the privilege of being able to grab food on the fly, without insurmountable anxiety.

Another way in which OJ’s ED still affects our lives is that traveling is difficult. Traveling is (or was) a part of my identity and is something I absolutely love. The last time I went away for the weekend, OJ relapsed, making me fearful of that the next time I decide to set out on an weekend adventure.

So the question is, how do I make the distinction between her recovery and my own? As one mother who I met at NEDA put it, I create “being days,” or really for me it’s more like an hour or two. I try to carve out time in my week to do something that I enjoy. I also have learned how to assert my needs, something that I was actually terrible at (just ask OJ!). I try to put on a poker face and pretend that everything is okay, but according to OJ, I’m transparent when it comes to my feelings.

As caregivers, our voices are usually left out of the conversation around eating disorders. It’s hard for me to know when my voice is important enough to share if/when OJ is struggling. That is why being asked to present on the family panel at NEDA was such an empowering experience for me.  #almostfamous


Sharing my story with such a large audience was just one way in which I hope to shed light on how important it is for our stories, as carers, to also be told. After I gave my speech, I was met with an overwhelming amount of support and encouragement from the eating disorder community. I too, left the conference with an increased desire and motivation to continue down my recovery path towards finding my own identity. I look forward to walking down this road with many of you in finding ways to amplify our voices as one collective community working towards eating disorder prevention, early diagnosis and intervention, increase affordability and access to care, integrative care, and gender/sexuality literacy.

Here is my story that I shared this weekend at the NEDA conference. Enjoy!

in love and support,


featured image via Bert Kaufmann with slight changes

Have you lost your own identity while taking care of a loved one? If so, what have you done to reclaim your voice and sense of self?

reclaiming a lost identity as a carer at the NEDA Conference
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2 thoughts on “reclaiming a lost identity as a carer at the NEDA Conference

  • October 6, 2016 at 6:03 pm

    That speech was amazing! Bravo for your bravery and courage! 👍


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