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You Will Always Belong

By Judy Krasna, F.E.A.S.T. Executive Director

Losing a child to an eating disorder is the worst nightmare of every single parent in our community. I am living that nightmare personally. While I don’t hide it, I try to be considerate about the fact that I know it scares the living daylights out of all of you. I am afraid that talking too much about the mortality rate of eating disorders, the risk of suicide, and the loss of my daughter will drive you away from F.E.A.S.T, will rob you of your hope, will cause damage to your already vulnerable psyche, and will undermine your belief in your child’s recovery. That is the last thing that I would ever want to do.

I sincerely believe that eating disorders are treatable illnesses and that recovery is always possible; and with that, I know that people die of eating disorders every day. Two families in our community have lost their daughters recently, and I feel the need to say something about it.

First and foremost, my heart is with the families, and I send my deepest condolences. On one hand, I know what they are going through; on the other hand, I have no idea what they are going through. Each family processes and experiences loss and grief differently. I do know that the death of a child is the worse kind of torture and affects your family in countless ways. You don’t ever recover from a loss of that magnitude, but you can find a way to move forward. Some days are almost normal. Others are filled with an immense sense of sorrow and anguish so profound that you can feel like you are drowning in it.

When my daughter died, I was afraid that I wouldn’t be welcome in the F.E.A.S.T. community or that I wouldn’t be able to contribute anymore. I was scared that no one would want me around because I would be a symbol of failure. I would be a reminder of the worst-case scenario, a daytime version of everyone’s most terrifying nightmare. And as much as I still needed the F.E.A.S.T. community, I would never have stayed had I felt that my presence would harm others.

It was my dear friend and mentor, former F.E.A.S.T. Executive Director Laura Collins Lyster-Mensh, who convinced me that I was still welcome at F.E.A.S.T, and that it was the job of the F.E.A.S.T. community to make space for me and for other parents who lost their children, even if my presence made them uncomfortable. That discomfort wasn’t on me.

It pains me greatly to say this, but it is likely that our community will experience more loss. When that happens, we need to be there for the families who are mourning their loved ones. We need to support them, we need to let them know that they are still welcome, we need to embrace them, and we need to pull them in to F.E.A.S.T. by offering them the opportunity to remain engaged and involved to whatever degree they feel is beneficial, if they so wish.

F.E.A.S.T. is all about meeting families where they are. There are members of our community, myself included, whose loved one’s journey may have ended, but the family’s journey is not over. We still need the warmth and support of the community; we still need space within F.E.A.S.T. because it helps us feel connected to our children.

I fully understand how hard it is to hear that someone else’s child lost his/her life to an eating disorder, because it means accepting that everyone with an eating disorder is vulnerable, including your own child. I know how distressing it is to let yourself go there; and yet, if we are to help, support, and include bereaved families in F.E.A.S.T, then there is no other choice.

I have been on both sides of this situation. As the mother of a newly diagnosed daughter, I lived on the Around the Dinner Table forum. I inhaled the wisdom, the information, the guidance, and the advice that experienced parents offered. I felt grounded, connected to others who could understand what I was going through. The ATDT Forum was my lifeline, and I held onto it fervently, until one post “ruined” the forum for me. It was titled “She Died”, and as soon as I read it, I felt like I couldn’t breathe. My heart was pounding. Reading about the mortality rate of eating disorders on the internet was not the same as coming in contact with a real mother who lost her daughter. In a total knee-jerk reaction, I immediately closed the forum on my computer, and I didn’t reopen it until 14 years later, when I took this job. I ran scared. The fear was legitimate; but in retrospect, I understand that walking away from F.E.A.S.T. was self-defeating, which is why I sincerely hope that my message doesn’t alienate any parents out there. I realize now that I left a mother who just lost her daughter unsupported. This mom had been using the F.E.A.S.T. community as her support throughout her child’s illness and it only makes sense that she would want to use the same community for support following her daughter’s death. We need to be there.

My perspective now is different, both personally and professionally.  I think we need to accept and manage the discomfort of acknowledging, supporting, and embracing bereaved families even though it can be traumatic to face the mortality rate of eating disorders as the loss of a child to a family like yours and not as an abstract statistic. We need to do this because F.E.A.S.T. is an organization dedicated to kindness, because bereaved families need a space within F.E.A.S.T; and most of all, because it’s the right thing to do.

I can’t imagine what my life would be like had there not been space for me at F.E.A.S.T. after my daughter died. I am so grateful to F.E.A.S.T. for making that space for me, for welcoming me back, and for letting me know that I still belonged.

To the families who have lost a child, please know that your pain is our pain, know that F.E.A.S.T. is still here to support you, and know that there will always be space for you here at F.E.A.S.T. You will always belong.

 

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10 Comments

  1. kate

    Thank you for your bravery. It is hard to hear about families who have lost their loved ones to this devastating illness but this is real and we need to acknowledge this. I live in that fear currently as my 17yr old D with AN is severely ill. This is an incredibly supportive forum from which to draw strength, wisdom and compassion for each other. Kia Kaha (stay strong). XX

    • Diane

      Kate, I’m sorry that your daughter is so ill, but be courageous and hope. When my daughter was in her late teens and early twenties, I lost hope that she would ever make a full recovery-she’d been sick for so long. Now in her late twenties, she’s been in a solid recovery for five years. Keep fighting for her-she’s worth it!

  2. Diane

    Judy, thank you for all your service to FEAST. You are so generous to FEAST and the parents who need this lifeline. I’m sorry for your loss and your reminder that the families of FEAST need our support, no matter where they are in their journey with loved one’s illness. Sending hugs and prayers to you and your family!

  3. Natalie

    Dear Judy,

    I will admit I hesitantly pressed the link to this blog post exactly because of the reason you exposed above. I feel -as do probably most families on F.E.A.S.T.- so traumatized by what this illness has created in our family history, and I can only imagine what it means for bereaved families. But this is reality, this is the truth: people die from EDs, and if we don’t talk about it, we are basically ignoring the people that need this community the most and the chance to educate others. Judy, you are an unstoppable force, and I and all F.E.A.S.T. families are grateful for every thing you do every single day to create change and awareness in this field. Thank you so much <3

  4. Mona

    Judy: Thank you so so much for your post. There is no doubt that ED’s job is to take our child’s life one way or another. Because of your post, I WILL return to ATDT. I truly felt that I posted too often and complaining far too much about my daughter’s Anorexia. You are right, we NEED to be accepted were we are and I so appreciate this post. I am so sorry for your loss and my God bless and be with you and your family. Again Thank You……

  5. Michael Dorn

    Hi Judy

    Thank you for so eloquently expressing so many of the feelings that I, also, had after we lost our daughter to this horrible disease. At first I withdrew, thinking that no one would want to hear from a “failed” parent. Not only was there the obvious trauma of loss, but also the (unwarranted, but still real) guilt that accompanied it.

    But for my wife and myself, the fact that we were in counseling regarding the difficulty of treating our daughter transitioned quickly to grief counseling. With the help of a caring professional, we realized that we still had things to offer to those navigating the rough waters of ED. Although ultimately unsuccessful, our knowledge of providers, experience navigating insurance issues, and day-to-day survival as caregivers were all things that we’ve since translated into a mission to other caregivers and families.

    Yet, almost 6 years after her death, there are times that we still don’t feel like we “belong”. Thank you for the reassurance you provided us, and all families in the same situation, today. Keep fighting, everyone. The battle is worth it!

  6. Ohara

    Thank you so much for this post.
    As a mother of someone severely ill with anorexia – wondering if she will make it through each night/day at the moment, I am finding myself looking to the parents of people who have lost the battle against this illness and just wondering what lies ahead for us.

    I am so sorry for what you have been through Judy, your voice is always a comfort and your strength shines. Your place in this community is very important and the voice of all bereaved parents should help shape the treatments of ED in the future.

  7. Laura Collins Lyster-Mensh

    FEAST was founded to be as you remind us we can and must be: kind and welcoming and courageous. Your leadership is all of that, and a tremendous gift. You speak from the reality of what connects us: the devastating effects of eating disorders on individuals and their families. Thank you for all you do to support, teach, and lead!!

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