By Judy Krasna, F.E.A.S.T. Blogs Editor and Volunteer
The day that I gave birth to my triplet daughters was one of the scariest days of my life. I went into labor 10 weeks early, at 30 weeks of pregnancy, and I was being prepped for a C-Section. I had been given a drug which was supposed to hasten the development of their lungs, but only one dose, and no one really knew if it would have enough effect to enable them to breathe on their own once they were born. I was so terrified that my whole body was trembling, it probably looked like I was having a mild seizure, and the anesthesiology resident thought that I was having a reaction to the anesthesia that he had put into my IV a few minutes earlier. I was able to stutter the words, “Not anesthesia, scared” out so that he would relax. Him freaking out on top of my freaking out was very unproductive.
They say that you don’t remember the pain of childbirth (not sure who says that exactly, but it’s probably a man…), but that fear is imprinted in my memory forever. There are some experiences that are so frightening that you can’t shake them, even decades later. For me, the period of refeeding my daughter following her eating disorder diagnosis carries that same memory imprint of fear and uncertainty.
Refeeding a loved one with an eating disorder is grueling, both physically and mentally. It’s exhausting and depleting and life-disrupting. It’s a battle, and parents need to be warriors. This is excessively difficult under normal circumstances.
I cannot even imagine what it’s like for those of you dealing with the early stages of diagnosis and refeeding during this COVID pandemic. My heart goes out to you; you have been hit with 2 sucker punches instead of just one, and it must be doubly hard for you to get back up on your feet and put on your battle gear.
You may have to wait longer for treatment. You may have to resort to online treatment, which for some of you may not be ideal. You may be unable to visit your loved ones who are in residential treatment centers because of COVID visitor restrictions. You may be dealing with the quarantine of yourself or other family members which makes refeeding that much more difficult.
From what I have seen, there is additional anxiety all around that must make caregiving seem even more overwhelming.
It sucks, and I’m sorry. I’m not going to offer you empty words or annoying platitudes. I can, however, assure you that you are not alone. F.E.A.S.T. is here for you. Use our amazing parent forums for advice and support. Try our FIRST30Days service if you haven’t yet registered. Reach out to our parent support lines and get resources that can help you better navigate your loved one’s illness. We are here for you in so many ways; we care, and we want to help. We at F.E.A.S.T. remember what it was like to feel the way that you are feeling right now, it’s imprinted in our memories. Once upon a time, we were you.
Self-care is always challenging when you are the caregiver of someone with an eating disorder. I can only imagine how much more difficult self-care is right now in the shadow of COVID. In Israel, where I live, we are under lockdown. Nothing is open. You can’t escape to the mall for an hour or sit in a café with a friend over coffee. You can’t go to a salon or to a movie. You can’t go on a date night with your spouse or partner unless you can figure out a creative idea for a date night in your backyard. For parents who already feel trapped by their loved one’s eating disorder, the additional limitations on movement resulting from COVID regulations must only exacerbate that feeling even more. The ability to “escape” is restricted significantly. That has to be really rough for parents who are desperate to get away from their child’s eating disorder if only for a few minutes. There is no shame in that feeling–as I said, we have all been there.
I have found that one of the best ways to care for myself is through connection to others. I live 6000 miles away from my best friend; and over the past 3 months, I have felt every one of those 6000 miles. However, during my worst moments, I find that connecting with her even through text messaging is able to give my spirit the boost that it needs for me to keep on keeping on. I can be in the worst mood and tell her everything that is on my mind; and somehow, at some point during the conversation, I find myself smiling, and I feel that weight being lifted off of my heart. In Grey’s Anatomy terms, she is my “person”. Everyone needs a person. If you have a person, don’t be afraid to burden them with your problems and your thoughts. That is how these relationships work. They are deep and genuine. If you don’t have a person, find people who have the emotional intelligence and sensitivity to be there for you and support you, even if they don’t understand exactly what you are going through.
Each person has their own formula for self-care. After my daughter died, when people asked me how I was doing and I said that I was restless and unable to focus on anything, I can’t tell you how many people told me to “go for a walk”. Yeah, no thanks. What worked best for me was shutting down my brain and turning on Netflix. I could spend a whole afternoon watching mind numbingly stupid shows; and it wasn’t a waste of time, it was self-preservation.
Do whatever helps you take care of yourself, and do it as often as possible. I know, it’s not easy. And remember that no matter how much it can feel that way sometimes, you are not alone.
I’m so sorry for your loss. Did your daughter die due to her eating disorder?
So sorry for your loss and thanks for your words of wisdom. I have triplets too ( 2 boys and a girl) . My daughter is suffering from AN . For 6 yrs no one listened to me regarding her ED , anxiety , OCD and perfectionism. I was “looking for something that wasn’t there”. Now the medical team is listening ….6 yrs too late . Mothers know best .
I find it interesting that you had triplets as well. Is EDs more common in multiple births ?
I sure your little angel is watching over you giving you the courage and strength to help others . Thank you xo
Rowena when my daughter was first diagnosed, I was looking into research on whether ED’s are more common in multiple births, whether they are more common in preemies, whether they are more common in people who had mono multiple times as my daughter did, who are prone to strep throat…and I didn’t really come to any conclusions. Since ED’s have a genetic component and run in families, I am not sure how much you can specifically attribute to multiple births vs. regular siblings–I will leave that to the researchers I guess….
Thank you for this post, Judy. I find myself very often staring mindlessly at the television and I appreciate feeling seen by you, and the acknowledgement that self-care looks different for everyone. For me, like you, self-care looks like turning my brain off and getting lost in Lucifer or a Gossip Girl rewatch. Sometimes it even looks like binge-watching Vanderpump Rules. Shhhh.
I’m also the mother of a preemie. One thing I’ve been wondering about is the connection between ED and preterm birth, but I haven’t found much information on that connection. I feel in my gut that there is one, though.
My daughter was born at 24 weeks, and we spent the next four months visiting her in the NICU. Now, she’s seventeen, with a newly discovered eating disorder. Watching her battle anorexia, and struggling to be everything she needs while we refeed her and begin this journey, I keep finding myself thinking… “This is worse than those first four months.” But then I stop and think, WHOA. How can it possibly be worse than visiting her in the hospital every day for 110 days when she was a newborn fighting for her life? And yet, somehow, it is. It’s heavier. It’s scarier. I’m more tired, more broken. I’m battling something I don’t understand, something I can’t make sense of. At least, back then, she had an entire staff of doctors and nurses and specialists and experts responsible for her, fighting for her. It was out of my hands then. Now, though, it feels like its all up to me, and I’m so so terrified that my best won’t be enough.
Anyway, I just wanted to thank you for your post. It really resonated with me. Thank you for sharing your experience with us, complete strangers. I’m so sorry for the loss of your daughter. It’s something we should never have to experience. Ever.
Jessa, I totally understand what you are feeling. It’s a different type of scared and I get that now it feels like it’s all up to you. Know that you are not alone, there is a whole community of parents at FEAST here to support you during this difficult journey.
Thank you for sharing your thoughts and experiences. It helps to know that feeling is not mine alone. I’ve loved getting to know the FEAST supports and am so happy I found it. Take care and continue to enjoy Netflix in those dark moments. It’s saved many of us during COVID!