The Ultimate Body-Mind-Soul Disconnect: my experience with Hypothalamic Amenorrhea and RED-S
Updated: Jan 4
I have a confession to make. I’m not fully “recovered” from my eating disorder... yet.
And I say that with an element of caution because I don’t know if anyone who has suffered with a severe ED can ever completely recover. We learn how to manage our behavioral tendencies. We recognize that our ED thoughts and behaviors no longer serve us. We put our EDs into remission.
It’s an active process that requires choosing recovery each day, over listening to our EDs. I believe that full recovery is possible, but I'm not quite there yet.
I've been wanting to write this post for a long time now, but I didn't quite know how to put it into words. The material here is raw, vulnerable (as always) and scary, and I've been going through a really hard time mentally in order to face this.
In my experience, my ED has robbed me of alignment and connection between my mind, body, and spirit.
Overriding hunger and fullness cues - in extreme cases, hunger and fullness cues disappear.
Pushing my body to the limits - when my body asked for rest, I often didn't listen.
Loss of spiritual connection with myself, with my beliefs, with other people, because my mind was consumed with thoughts of food and exercise.
An ED is the perfect example of a brain-body-soul disconnection.
ED recovery takes a lot of reflection - I have to go back and unearth my biggest fears, face my scariest demons, take a deep dive into past experiences and traumas that I definitely don’t want to re-live. Things that I’ve buried for so long because they are far too painful. But as I progress further in recovery, I’ve realized that healing physically, healing spiritually, and healing mentally are all interrelated. The healing comes in layers.
Looking back and recounting my steps… I’ve realized: I’m 25 years old, and I struggled with severe disordered eating behaviors for 5 years of my life. That’s ⅕ of my lifetime.
A decently hefty chunk. And I don't want to let it take anything else away from me.
So back to being “not fully recovered”:
Something happened to my mind and body before I developed anorexia, when I was still binge eating due to depression, but starting to notice the diet culture all around me in Los Angeles. I started to implement a “low-carb/low-fat” diet to be what I thought was an "elite athlete". It was an innocent attempt to “fuel properly” for the hours of beach volleyball and weightlifting I was doing every day at UCLA. I was also stressed with school and the upcoming GRE exam I was studying for.
And then I lost my menstrual cycle.
The medical diagnosis for this is called: Hypothalamic Amenorrhea
In more recent research, it’s referred to as RED-S
Hypothalamic Amenorrhea.... Relative Energy Deficiency in Sport… what a mouthful. And let me tell you: as an athlete going through it, it’s intimidating and scary.
I haven’t had a menstrual cycle in 4.5 years, since June 2015. And originally, when I lost it, I didn’t think there was anything wrong with that. I mean come on… not having a period? Seems like a dream! I wasn’t going to complain about less acne, no more cramps, less bloating, no PMS and no more clean-up (enough said).
But when you get into the nitty-gritty and scientific details of why this happens, it’s not so glamorous. To put it simply, HA happens when a woman’s hypothalamus stops making reproductive hormones that are essential for having a period.
Factors that influence this brain-body disconnection are:
Restrictive eating (low-carb, low-fat, etc…)
Low body fat %
Stress (both psychological and physical)
Just one or a combination of all these things can contribute to a woman losing (or dysregulating) her cycle. And the loss of menses should NOT be overlooked. Many medical practices are now considering menses to be a vital sign in women, especially adolescents who are developing into young women.
Health complications of lost menses (in the long term) include:
Bone density loss
Increased risk for heart complications
I’ve also read that HA can contribute to early-onset Alzheimers and other neurodegenerative diseases, but I think more research needs to be done in that area.
Simply put: lack of menstruation = lack of estrogen [and other hormonal] production = long-term health complications.
***it’s also important to note that birth control doesn’t fix this problem. The body needs to be producing estrogen naturally in order to reverse the effects of HA and RED-S.
In any case, when I found out about all this and accepted what was happening to me, I was terrified. HA and RED-S are scary.
I’ve been lucky enough to maintain decent bone density for the past few years of my life. But I can’t deny this: it’s definitely decreased.
I’m also lucky to have a healthy heart (even though I’ve suffered from a couple of panic attacks and feel like I’m going to die, all tests on my heart have come out normal). I’m still amazed at the repairs my heart was able to do during hospitalization for my ED a year ago.
Our bodies really are miraculous in the way they are able to repair, restore, and regenerate when we treat them well. There's hope here… because with re-establishment of menses, all the above medical complications can be repaired and reversed.
This past summer, coming out of ED treatment in March, I wanted to give volleyball another shot. I wanted to rebuild a healthy relationship with movement and with my beloved sport.
And I did.
I experienced SO MUCH JOY playing beach volleyball, not trying to control food, not trying to control exercise or energy output. Just… living my life to the fullest.
Tournaments. Practice. Weights.
Bonfires with s’mores.
Church. Faith. Spirituality.
This summer, for the first time in over 5 years of my life, I felt like I was on a high. Thriving!!!
But still… no menstruation in sight.
I was still dealing with HA and RED-S, and it didn’t seem fair. After putting my entire life on hold for 6 months of ED treatment, after all the mental and physical work I’d done to get my body back up to speed, it still hadn’t come. Why???
So in the back of my mind this entire summer… I still knew that something wasn’t quite right. My heart and soul were happy. Mentally and spiritually, I felt amazing. But my body was talking - sometimes whispering, sometimes screaming - for more rest and healing. I constantly wondered whether I was continuing to put myself at risk for complications down the line, even though my providers had given me permission to compete and play. My body and my mind were still disconnected.
After the summer session for p1440 ended, and after purchasing Nicola Rinaldi’s book: No Period, Now What?, I decided to accept whatever my body needed to do to reestablish a menstrual cycle, and reestablish natural hormone regulation.
After consulting with many people and educating myself a lot, I decided to take a leap of faith.
I cut out all high-intensity exercise besides walking and light stretching (yes, that means cutting out beach volleyball too).
I increased my daily caloric intake to XXXX calories per day, as recommended by my current dietician.
Both of these things are incredibly difficult for me to do. This is the second time I’ve had to cut off all exercise (one of the things I enjoy most in life) for the sake of taking care of myself. I felt like I had taken steps backward in recovery, and was right back in ED treatment with my exercise so restricted and my meal plan so high. I also fear losing the community of p1440 and all the wonderful people I play beach volleyball with. Y’all are my cherished friends, and I miss you. <3
And… it feels different this time around because I am consciously making these choices. I am holding myself accountable. I am taking care of myself. But it's hard!! I am actively going against societal standards of beauty and “health” by cutting out exercise and accepting more weight gain in order for my body (and brain) to trust me again.
SO if you’ve made it this far, THANK YOU. I appreciate you. There’s a lot at play here because this subject is uncomfortable for many, it’s frightening, and it’s complicated.
If there’s any takeaways I want viewers to absorb from reading this, it’s the following:
Female athletes: don’t ignore your menstrual cycle if it becomes irregular. Get your hormones checked. Nobody wants to suffer those health complications down the line.
Parents: make sure your daughters are menstruating regularly. Our cycles are a vital sign for us in adolescence and adulthood.
Men: this is uncomfortable for you, I get it. But you should at least know about this because it contributes to the health of the women around you. My guess is you probably have a mother, daughter, sister, cousin or female friend in your life.
Coaches: be aware of this subject. Look after the menstrual health of your athletes - you don’t have to fix the problem, but you can guide your athletes to professionals who can help.
I’m also happy to report that… after 5 weeks of trusting this process, my period has made an appearance. I GOT DAT FLOWWWWW BACK. Who knew a girl could be so excited about getting her period back???
It’s going to take a while for my body to fully regulate, and ideally, I should have 3 cycles before I start integrating intense exercise and volleyball into my life again. This is only the first step in re-establishing trust between my body and brain, but I’m beyond excited about it.
4.5 years later, I finally have a sign that my body trusts me again.
As I’ve said in a few of my blog posts, I truly believe that God has a hand in this entire journey. For example...
Just a couple weeks before I decided to cut off exercise and eat more, I attended a worship night and while we were all singing, I kept hearing the word “rest, rest, rest…” but quietly, as if it were coming from my soul. Matthew 11:28-30
I experienced a morning of intense emotional pain and healing from past trauma in my childhood - that same day, my period arrived.
And just today, the same day I decided to post this, a powerful story on RED-S was released by the NY Times. Click here.
God, the universe, whatever power it be that you might like to call it, works in mysterious and beautiful ways. This stuff doesn't happen by accident.
These past couple of months have been very hard for me. Harder than I can really express. I’ve been really struggling mentally, feeling disconnected from my community and not being able to engage in the sport I love.
But my hope has been rekindled: because for the longest time, I believed that I would never restore my period. That it wasn’t possible for my body to fully heal. That I wouldn’t be able to return to beach volleyball in a healthy way.
However, after developing a healthy relationship with beach volleyball and exercise this summer - and after sitting my butt down, resting, and eating like my body asked me to - I believe it’s possible. It’s going to take a while, it’s going to take even more hard work than what I’ve already put in, but I believe I can have both in the future.
Beyond the physical healing, there is spiritual healing, there is mental healing. As one part of my being heals, the other follows. It’s amazing to experience this transition because they’re all connected. I'm grateful.
My body, my mind, and my soul are finally reconnecting.
Recovery is worth it.
As always, I hope that in sharing this, someone who may be going through something similar finds that they are not alone, and that there is hope.
Thank you for reading and special thanks to my family and friends who have supported, listened to me, and prayed for me during the hard times. It means the world.
Sending love and light.
Sources on HA and RED-S: