In this episode titled “The Unspoken Realities of Eating Disorder and Hypothalamic Amenorrhea Recovery,” I share my own personal experiences and explore 10 unspoken realities that people with these conditions often face.
I discuss the feeling of falling behind in life and the sense of loneliness that comes with feeling like nobody truly understands what you’re going through. I also delve into the emotional toll of these conditions, including the intense sadness and constant crying that can feel overwhelming.
Additionally, I address the self-doubt that arises during recovery and the deep questioning that occurs with every decision made, even when seeking professional help. I also touch on the potential loss of identity and the search for a new sense of purpose and meaning in recovery.
The financial burden of recovery, including the cost of treatment and its impact on employment and finances, is also a reality that I explore. I highlight the difficulty of rebuilding a positive relationship with food and body image and the ongoing nature of this process.
Furthermore, I discuss the fear and anxiety around weight gain during recovery and the physical discomfort and digestive issues that can arise during the renourishment process.
Overall, this episode offers a candid and personal perspective on the unspoken realities of eating disorder and hypothalamic amenorrhea recovery. It aims to shed light on these often-hidden experiences and provide support and encouragement to those going through the recovery process.
Episode Transcript
Today’s podcast episode is about the behind the scenes of what it’s like to go through recovery. Whether that’s recovery from an eating disorder, disordered eating or exercise, or hypothalamic amenorrhea, it’s likely you’ve experienced or can relate to some of the topics I’m going to talk about today. I wanted to make this episode because when I’m working with clients they’ll often want to ask me a question about something recovery related and usually the question starts with “it is normal to feel this way…” or “does anyone else going through recovery feel like this?” and most of the time the answer is a resounding yes.
However, the issue is that these are the less spoken about aspects of recovery and never get as much lime light as what to eat, or how to move your body, but they are just as important. I’ve got 16 in total to talk about today so I’m going to dive right in.
1. Feeling like you’re falling behind in life
One of the things that’s really hard for me to think about is how much of my life my eating disorder took away from me. How it robbed me of the fun of my late teens and early twenties, made me isolate myself, stopped me from studying, made me uninterested in my friendships or romantic relationships, made me too scared to travel and so much more.
Nobody talks about how you watch the people around you start their first job, go on their first European holiday, have amazing nights out with friends, move in with their friends or boyfriend/girlfriend, and there you are spinning your wheels. At times it felt like I was watching my own life pass me by and that was incredibly sad.
Being in recovery feels like you’re falling behind in life because taking care of your mental health requires so much time and attention. It takes most people years of treatment to get to a better place so they can go and focus on other important areas of their life. But even once you’re recovered you can’t help but feel sometimes that you should be further along. I know that sometimes that happens to me.
And when those moments arise I try to look through a compassionate lens and say to myself “imagine if I never chose recovery… imagine if I just decided to live with the status quo… you may feel like you’re behind, but in reality you’re exactly where you need to be and so much further than you’d ever be if you never chose recovery.”
2. Feeling really alone and like nobody understands what you’re truly going through
The second unspoken reality of recovery is feeling really alone and like nobody understands what you’re going through. This is, in part, true. Nobody will know EXACTLY what it’s like to go through your own personal experience, but there are a lot of people who can relate to the commonalities we all go through in recovery.
I think a lot of the reason people tend to feel alone is because they keep their thoughts wrapped inside their heads, and the eating disorder tells them not to say anything about it. Maybe there are thoughts around being judged or criticised for what you’re thinking or how you’re feeling? Or maybe you just keep telling yourself you shouldn’t be having these thoughts because you’re trying to recover and you should be better by now? Whatever the reason, it creates and perpetuates this deep sense of misunderstanding.
Add to this that a lot of disordered eating behaviours that also frequently happen with hypothalamic amenorrhea DO keep you physically isolated. Maintaining certain routines and rigidity around food or exercise often means you likely say no to social engagements with friends and family, and the very time that they take in your day also means you simply may not have time for anything else.
I felt so alone in my own recovery until I realised thousands of people, if not millions, are going through what I am, and that finding other people to connect with would allow me to feel less isolated and less misunderstood. The knock on effect of that would be how much more empowered I felt in my own journey because I realised there wasn’t anything inherently wrong with me AND that connection would make me feel more confident in myself and my ability to break my routines and rebuild my life again.
3. How emotional you feel all the time
Ugh so much sadness, and anger, and frustration, and just BIG emotions that started coming up when I was really moving forward in my recovery. It kind of felt like I was a toddler again that didn’t know what to do or how to deal with them so I’d just have these meltdowns where I’d cry, or have some outburst that felt like it came out of nowhere. It was awful and normally the people around you are the ones who bear the brunt of the rollercoaster of emotions you experience.
Having an eating disorder or hypothalamic amenorrhea can often feel like living in this grey zone of emotions, where the highs and lows don’t really peak or trough that much. But then this weird thing happens when you start to remove the emotional coping strategies that your disordered behaviours provided… you start to experience this wide range of feelings and it feels like your moods are out of control.
That’s exactly how I felt and I was so thankful that group therapy showed me this was a completely common experience and I wasn’t the only person going through it. Feeling again is actually a good sign, but at the start it can feel quite intense. Learning how to ride these waves will show you that there’s nothing to be feared by having emotions and you can cope with them without ever needing to turn to your disordered behaviours again.
4. How you feel like there’s something wrong with you that recovery has taken you this long
Reaching full recovery often takes a really long time and multiple attempts. If you’re tried and failed before or you see other people around you who are absolutely nailing their own recovery but you feel stuck, you might feel like there’s something wrong with you.
I was stuck in quasi-recovery for a lot longer than I care to admit and this was one of the thoughts that actually kept me stuck. I used to think, maybe this is just who I am, or maybe there’s something I inherently lack which allows everyone else to recover but me? It was this kind of thinking that led me to berate myself and give up when something went wrong in my own recovery journey.
However, everything changed when I started to realise I actually didn’t lack anything other than compassion. I didn’t lack any other skills or abilities, other than the kindness I’d gladly show to others. When I started to work on harnessing self-compassion everything changed. I realised that I could do things scared, because anyone in my situation would likely feel this way. I could rewrite the narrative from “there must be something wrong with me…” to “nothing is wrong with me and I can try again…”
I honestly think self-compassion can be the biggest superpower so if you want more specifically on how to harness this in your own journey I would check out episode 123 of Holistic Health Radio titled “The Importance of Self-Compassion with Emilia Thompson PhD”
5. The overthinking and questioning that happens with every decision you make
The overthinking you experience sometimes feels like your brain is on fire. Am I eating enough? Should I be taking more rest? Did that stupid run I went on last week setback my recovery more?
It’s like you’re living in a tornado of thoughts 24/7. That’s how I felt and how many of my clients feel too. The overwhelm is all consuming and the reason why it persists is because there’s a deep distrust you have with yourself.
When you are living with an eating disorder, disordered eating or hypothalamic amenorrhea, so much of your day is dictated by rules and routines, so there’s not actually that much thinking involved. But when you start to engage with recovery everything changes. You get permission to eat more, and rest, and you’re told to listen to your body. It’s all foreign and kind of scary, and you worry you’re not doing it right.
A lot of my clients will go “just tell me what I need to do” which is of course what I help with in the initial stages of recovery, but as we move through I’m asking them to be more autonomous which is where more of the overthinking starts. One of thing things that helped me in my own recovery was “What would a person who trusted themselves and their body do in this situation?” And it’s often the same question I give my clients too. Because rebuilding trust with yourself and your decisions means you’ll have all the tools you need to not only recover, but make good decisions for yourself in all aspects of your life.
Now of course I’ve done a few more episodes specifically on these topics so if you want more, I’d check out:
- Episode 87: How to Build Confidence in Hypothalamic Amenorrhea Recovery
- Episode 151: Overcoming Decision Fatigue in HA and ED Recovery
6. The potential for a sense of loss or grief around the identity of being someone with an eating disorder or HA, and how to find a new sense of purpose and meaning in recovery.
This one hits home for a lot of people. I know personally that I had an eating disorder for quite some time and HA for even longer. I often thought to myself “who am I without all this?” and it was such a scary thought. Would I be interesting? Would I be successful? How would other people see me?
I always tell people that often an eating disorder overshadows who you truly are at your core. You’ve never lost those things, but rather fallen out of touch with your values and what truly matters to you. Recovery isn’t so much about reinventing yourself as it is coming home to yourself. But that requires a lot of letting go.
And this can often feel like grief so if this rings true for you I’d highly urge you to listen to episode 179 titled “The 5 stages of grief in ED or HA recovery: why letting go of your disordered self can feel like losing a loved one”
7. The reality of the financial burden of recovery, including the cost of treatment and the impact on employment and finances.
As someone who has personally gone through the process of recovery from an eating disorder and hypothalamic amenorrhea, one of the unspoken realities that really hit me hard was the financial burden that came with it. Eating disorder treatment can be incredibly expensive, and unfortunately, many insurance policies don’t cover the full cost.
In my case, I was fortunate to have some coverage through my private health insurance, but it was still a significant expense. Even with coverage, there were still gaps to pay, and I had to take time off work for appointments and treatment sessions. This meant dipping into my savings more than I’d like to admit.
The financial impact of recovery also had a ripple effect on my employment and finances. I had to take time off work, which meant lost wages and missed opportunities for career advancement. I also had to cut back on expenses and activities that I enjoyed in order to make ends meet, which was a difficult adjustment.
I know I’m not alone in this experience, and I think it’s important to talk about the financial realities of recovery. It’s not just a matter of “getting better” and moving on with your life; there are real-world consequences and challenges that come with it.
It can also feel really difficult to even make the financial investment because you may not feel “worthy” or deserving of help, but trust me you are. I could look back on all the money I spent on myself to get better and think about all the holidays I could have gone on or nice holidays I could have had or even the house deposit I’d probably have now if I didn’t have to support myself in recovery, but instead I see it as the most worthwhile investment I ever made because I’m now happy and healthy and fully recovered and I have my life back.
I hope that by sharing my own experience, I can help anyone out there who may be struggling with the financial burden of recovery, and encourage a larger conversation about how to make treatment more accessible and affordable for everyone.
8. The reality of having to rebuild a positive relationship with food and your body image, and how it can be a difficult and ongoing process.
As someone who has gone through the process of recovering from an eating disorder, one of the most difficult and ongoing challenges was rebuilding a positive relationship with food and my body image. For years, I had developed a deeply ingrained negative self-image and had developed a lot of guilt and shame around my food and exercise habits.
When I first started my recovery journey, it was overwhelming to think about having to completely relearn how to eat and how to view my body. Even though I knew it was essential for my physical and mental well-being, I was still plagued with anxiety and fear around the idea of gaining weight and letting go of my old habits.
However, over time, I realised that this was going to be an ongoing process and one that required constant work and attention. Choosing recovery isn’t some light switch that you flick and then everything gets better. It also wasn’t just about changing my behaviour around food; it was about changing my mindset and the way I thought about myself.
One of the most important things I learned was the importance of self-compassion. I had to learn to be kind and gentle with myself and recognize that this was a difficult process that required patience and understanding.
Another key factor was seeking support. Whether it was through therapy, support groups, or talking to friends and family, having a supportive community made a significant difference in my recovery journey.
Despite these efforts, rebuilding a positive relationship with food and my body image remained a difficult and ongoing process that took years for me. I’d be doing really well and then all of sudden I’d have days when negative thoughts and beliefs would resurface, and I had to work hard to challenge them with positive affirmations and self-talk.
Overall, the reality of rebuilding a positive relationship with food and my body image was challenging, but it was also a journey of growth and self-discovery. I learned to trust my body and listen to its cues, and I learned to appreciate food for its nourishing qualities rather than as a source of guilt and shame.
If you’re on your own journey of rebuilding a positive relationship with food and your body image, I encourage you to be patient and kind with yourself. Seek support and don’t be afraid to ask for help when you need it. Remember that small steps towards progress are still steps forward, and celebrate your victories no matter how small they may seem.
9. The fear and anxiety that can arise around weight gain during recovery.
As someone who has personally experienced an eating disorder, one of the unspoken realities of recovery that I found particularly challenging was the fear and anxiety that came with weight gain.
For me, weight gain was a necessary part of the recovery process, but it was also one of the most difficult aspects to come to terms with. I was scared that gaining weight would make me feel out of control and would cause me to hate my body even more. I was anxious about how others would perceive me and whether they would judge me for the changes in my body.
These fears and anxieties were heightened by the constant messaging we receive from society that thinness is ideal and desirable. It felt like everyone around me was striving for a smaller, more toned body, and I felt like I was the only one going in the opposite direction.
What I learned through my recovery journey is that weight gain is not a reflection of my worth as a person, and that my body is capable of amazing things when I nourish it properly. It took time and a lot of work, but I was eventually able to let go of my fear and anxiety around weight gain and focus on my health and well-being instead.
I realise I say this from a very privileged place as I still recovered into a socially acceptable body size, but whatever your body type, doing this internal work is essential to get to a peaceful place with your body.
If you’re finding weight gain is a really big roadblock for you then I’d encourage you to check out:
- Episode 91: Tips for Embracing Weight Gain During Recovery
- Episode 103: How to deal with weight gain and body changes in HA and ED recovery
- Episode 174: So, you’ve gained weight… but what else have you gained?
10. The physical discomfort and digestive issues that can arise during the renourishment process.
After years of restricting my food intake, my body had become accustomed to a certain way of functioning, and the sudden influx of food during the refeeding process was a shock to my system. I experienced bloating, constipation, and diarrhoea, which was not only uncomfortable, but also made it difficult to focus on my recovery.
At times, it felt like my body was working against me, and it was frustrating to deal with these physical symptoms on top of the emotional and mental challenges of recovery. However, I also knew that this was a necessary part of the healing process, and that I had to be patient and kind to myself as I worked through these issues.
Over time, with lots of nourishment and patience, my digestive issues began to improve. It was a slow and gradual process, but I started to notice less bloating and discomfort, and my bowel movements became more regular. It was a sign that my body was healing and becoming more resilient.
If you’re going through the refeeding process and experiencing physical discomfort and digestive issues, here are some tips that might be helpful:
- Be patient with yourself. Your body has been through a lot, and it will take time for it to adjust to the changes.
- Adjust your water and fibre intake to a level that improves your system and digestion. More is not always better.
- Talk to your treatment team about any supplements or medications that might help alleviate your symptoms.
- Focus on gentle movement that can stimulate digestion. I found twisting yoga poses and the breathing associated with the practice incredibly helpful.
Check out my other podcasts on digestive discomfort in recovery including:
- Episode 152: Causes and Solutions to Bloating in HA & ED Recovery
- Episode 161: Is The “Hot Girls Have IBS” Trend Helpful or Harmful?
As someone who has personally gone through the recovery process from an eating disorder and hypothalamic amenorrhea, I know firsthand the importance of shedding light on the unspoken realities of recovery. It can be challenging to navigate the financial burden of treatment, rebuild a positive relationship with food and body image, and deal with the physical discomfort that comes with refeeding. However, it’s crucial to recognize that these struggles are all a part of the healing process.
Throughout my own journey, I’ve learned the value of patience, self-compassion, and a supportive community. By speaking up about these unspoken realities and creating a safe space for others to share their experiences, we can provide a sense of understanding and validation for those who are struggling with their own recovery.
It’s important to remember that recovery is a process, and it takes time and effort to overcome the challenges that arise along the way. However, with the right resources, support, and mindset, it is possible to heal and regain a sense of peace and balance in life.
If you’re currently struggling with an eating disorder or hypothalamic amenorrhea, it’s important to know that you don’t have to go through the recovery process alone. There are many resources available, including 1:1 and group coaching, that can offer guidance, support, and encouragement along the way.
As a coach who specialises in eating disorder and hypothalamic amenorrhea recovery, I offer individualised coaching services that can help you navigate the challenges of recovery and create a personalised plan for healing and growth. Through my coaching programs, I provide a safe and supportive space where you can share your experiences, ask questions, and receive guidance and encouragement.
So if you’re struggling with the unspoken realities of eating disorders and hypothalamic amenorrhea recovery, know that there is help available. Don’t be afraid to reach out for support, and remember that healing and recovery are possible.
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