Chronic Pain & ED Recovery (Part 1)

The overlap between chronic pain and eating disorder recovery is not a topic that I have seen discussed very often online; however, my experience trying to navigate physical pain while in the midst of recovering from an eating disorder has been profoundly difficult and has impacted my life drastically. EDs obviously intersect with other components of one's identity and experiences in diverse ways, but the lack of conversations about the particular intersection with chronic pain has made me feel extremely isolated. Perhaps this is too niche of a topic, but, if sharing my story helps just one person feel less alone, I know it will be worth it! I am also hopeful that, even if you don't deal with chronic pain or chronic illness, there are likely aspects of this situation that will still be resonant.

I decided to separate this blog into two posts, given how long this story is (also, brevity is not a strength of mine). In this first post, I give pretty extensive background information about the circumstances that led me to needing back surgery and the challenges I faced post-op; in the second post, I focus more on the tricky relationship between sciatic pain and movement, which is made even more complicated for someone trying to heal their relationship with exercise. I also detail the emotions that have accompanied living with intense sciatic pain for an extended amount of time, as well as the ways this has impacted my professional and academic career. I conclude by reflecting on the significance of acceptance, and how this has helped changed my mindset with the pain - I think that the concept of acceptance is also extremely applicable in ED recovery (and, obviously, many other aspects of life in general). Lastly, at the end of part two, I also reflect on what I have learned about myself and my personality from living with chronic pain, and I offer what I hope is helpful advice/encouragement.

First, however, I want to issue a very important disclaimer. I have been extremely reluctant to publish a blog post about my experience with chronic pain, as I am deeply aware of the fact that I have an extraordinary amount of privilege, especially when it comes to my ability to access resources and medical care. I want to emphasize that I recognize how profoundly lucky I am to have insurance and to even be in the position of being able to go to the doctor, have surgery, pay for medication, go to PT, etc. I know that this is not the case for so, so many people, and my heart genuinely breaks thinking about those who have health-related challenges and are unable to access the care that they need to due financial circumstances. (As a side note, Project Heal is doing phenomenal work in this area, specifically as it relates to accessing ED treatment. I would highly recommend checking out their website and the resources that they offer). ALSO, I have been hesitant to share about how difficult living with chronic pain has been on me mentally and emotionally, as I am fully aware that so many others are navigating more debilitating illnesses, terminal diagnoses, etc. I know that I do have an immense amount to be grateful for (a factor that adds another complicated dynamic to this entire situation), and I recognize that things could always be much worse. As mentioned above, however, this experience has been supremely challenging for me and I have often felt very alone; as such, I think sharing my story might be helpful and/or relatable to someone else. I don't think that comparing challenges is necessarily productive, but I again want to emphasize that I am certainly not sharing this for sympathy or in any way trying imply that I have it worse than others.

About five years ago, I injured my lower back while doing heavy back squats. It was early in the morning - around 5:45am - and I was not anywhere close to being warmed up enough to handle the weight I had on the bar. As I was squatting down, I knew that I had made a huge mistake (the consequences of my carelessness were far, far greater than I could have ever imagined at the time). For a few years after this incident, I would experience back pain on and off. The pain would flare up seemingly randomly, but it never persisted for longer than a few hours; it didn't really inhibit me from going about my normal activities. I stopped all weightlifting and did my best to ignore the pain whenever it did appear.

In December 2022, my back began to bother me more consistently than ever before and the intensity of the pain became increasingly harder to manage. I am not sure exactly what triggered this, however, I had started practicing yoga frequently and I was completely unaware that there are certain postures that can actually aggravate the sciatic nerve if you have a pre-existing issue. My best guess is that, after consistently engaging in these postures for several months, I had unknowingly made the problem much worse. By January, I was experiencing daily pain. There was a major difference from anything I had felt in previous years - rather than simply being concentrated to the lower right side of my back, I began to experience a deep, shooting pain that started at the top of my glute and travelled through my hamstring, down my leg and into my heel. I also started to experience this same sensation in my right shin. The pain was overwhelmingly bad and I had no idea what was causing it. After doing some research, I started incorporating various stretches into my morning and evening routines, as well as avoiding the yoga postures that apparently could aggravate the nerve, but this did little to nothing to alleviate the pain. After a few weeks of this, I woke up on a Saturday morning in such an extreme amount of pain that I couldn't function. Since it was the weekend, I decided to go to an urgent care clinic. The PA gave me a steroid injection, which I figured would certainly help. My partner had a coworker who had dealt with sciatic pain, and he shared that receiving a steroid injection was tremendously helpful for him and essentially eliminated the pain. I naively assumed that this would be my experience as well. Unfortunately, the injection seemed to do nothing at all - a few days later, I was back at the clinic. This time, they gave me a different type of injection, which likewise did nothing. I started to do more extensive research and consulted friends in the medical field. I immediately began doing everything I could to manage the pain - I started physical therapy, began receiving acupuncture multiple times per week as well as deep tissue/sports massages and dry needling, using a standing desk, taking daily epsom salt baths, rubbing expensive CBD creams on my lower back, in addition to the frequent stretching I was already doing. I purchased different types of pillows that were supposed to alleviate sciatic nerve pain while sleeping and laying on the couch. I used a lacrosse ball to dig into my lower back and had my partner use a hand-held massage gun throughout the day. After months of PT - and diligently doing all the exercises I was prescribed at home - absolutely nothing had changed.

The pain was astonishingly bad. It was constant. It started to be all-consuming - I couldn't think about anything else because it was so intense. After exhausting all other options, I went to my PCP, who referred me to an orthopedic surgeon. The surgeon had me get X-rays and an MRI, which revealed a herniated disc that was hitting my sciatic nerve. As is the case with most doctors, he wanted to be sure that we had tried everything possible before resorting to surgery. Therefore, he recommended that I see another doctor who specialized in epidural injections. Apparently, this has been proven to be a successful, non-surgical option for many individuals struggling with sciatic nerve issues. Eager to do whatever necessary, we promptly scheduled the epidural injection. I was told that it could take at least one week to start helping, but realistically it would be about four weeks before we would know with certainty if it had helped. Sadly, four weeks later - nothing had changed. At this point, I was beyond frustrated and defeated. After I went back to the doctor for the follow-up, he recommended surgery as the last and best option.

The prospect of needing back surgery at my age was ludicrous to me. The surgeon felt confident that it would be a relatively smooth recovery process - 12 weeks of no working out (and various other restrictions) and then I could gradually build back strength through physical therapy. Given that I was still in the midst of recovering from an ED and a compulsive relationship with exercise, I was terrified at the thought of not working out for 12 weeks. However, the pain was so extreme that I felt like I truly had no other options. My quality of life had dropped so drastically that I was wrestling with suicidal ideation. I had lost the will to keep pushing through and felt like I had genuinely reached rock bottom. I was hysterically distraught everyday, and I dreaded waking up in the morning. The surgery was the obvious option, no matter how much panic my ED-related thoughts generated. 

For anyone who has experienced chronic pain, chronic illness, or other persistent health-related issues, you can likely relate to how defeating it can be to feel like you're doing everything "right." I was doing every single thing my doctor had recommended; additionally, I had done extensive research on my own (I read journal articles published by experts at the Cleveland Clinic and the Mayo Clinic, listened to podcast episodes, watched videos posted by doctors and pain management experts, etc.). I was beyond exhausted and frustrated that nothing was working. It was also extremely agitating when people - who undoubtedly had the best of intentions - offered suggestions or said things like, "Oh, I had a friend who dealt with sciatica. Have you tried doing ___?" Talking about it with family and friends started to only make things worse, since there wasn't really anything that someone else could say or do to make things better; I had reached the point where being told that this was likely temporary and/or things would surely get better was infuriating. Even if these weren't going to be my circumstances forever, that knowledge didn't change anything about the present. Furthermore, because none of the treatments had been successful and my symptoms weren't improving, it was difficult for me to believe that - at least in the short-term - things were going to suddenly get better. I started to feel really hopeless - more than that, however, I started to feel like I was going crazy. I began to worry that the pain was all in my head, especially since the treatments that seemingly worked for other people weren't doing anything for me. Even though the doctors reassured me that my pain was very real and that there were clear, scientific reasons for what was happening, I really felt like I was losing my mind. I worried that other people thought I was exaggerating the pain - or worse, making it up altogether. All this to say, I was in a pretty dark and desperate headspace going into the surgery, but I honestly didn't even consider the possibility that the surgery might not take away the pain. While I recognized that there were risks to undergoing surgery in general, I did fully believe that it would ultimately eliminate the pain, if everything with the procedure itself went according to plan.

The surgery did luckily go as planned and the doctor successfully shaved the disc down and freed my sciatic nerve. I was told, however, that it would take time for the pain to gradually decrease. Those first three months post-op were definitely a struggle, but I was just tremendously relieved to be "fixed." It genuinely did not occur to me that I might still experience sciatic nerve pain in the future. I thought the issue was entirely resolved - I just needed to get through my 12 weeks of recovery and then I would be back to working out and living pain-free.

I started PT several weeks post-op and felt pretty good overall. The 12-week mark really was when I started to feel "healed" from the procedure itself and I slowly began doing strength-building exercises and working out. I was not experiencing the shooting pain down my leg or in my shin very frequently, and there were days where the pain level was quite low. BUT, up until this point, I had been extremely nervous to sit and had avoided it as much as possible throughout the summer. Prior to the surgery, sitting was what caused the pain to flare-up most intensely, and it also was less comfortable post-op than standing or laying down. (People who deal with sciatic nerve issues usually have different experiences when it comes to what causes the pain to be most severe. For me, sitting was undoubtedly the most painful thing). About one month after surgery, my partner and I moved from Chicago to NYC. A few months later, my parents came to visit. While they were here, we went to dinner with one of my mom's friends who lived in the city - the dinner lasted for nearly three hours. This was the first time that I had sat for any extended amount of time (I had been doing nearly everything standing up until this point - I worked on my computer, read books, ate my meals, etc. at my standing desk. Whenever I would watch TV or spend time with my partner, I would stand. When I met up with friends, I would suggest going for a walk, or I would try and choose a coffee shop where there was a bar that I could stand at. I travelled around the city and to doctors' appointments by standing in the subway, never by taking an Uber or taxi). By the time we finally left the dinner, I was doing my best to hide the distress I was in - the shooting pain had returned, my back was throbbing, and I was devastated. I tried to downplay it as much as possible to my parents; I was in shock that the pain appeared to be just as intense as it had been before the surgery.

In an effort to be proactive, I went to see a new orthopedic surgeon in NYC, who assured me that this type of injury can sometimes take quite some time to heal. I walked him through exactly what I had been doing to recover, and I tried to give as much detail as possible. I was terrified that I was doing something wrong and had caused the disc to re-herniate - he assured me that I was doing everything correctly and that I needed to be patient. I began my PhD program, which obviously necessitated sitting in the classroom for extended periods of time. Wednesdays were my longest days - I had nearly 6 hours total of sitting at a desk. I began to dread Tuesday evenings, as I knew that the following day would be incredibly painful. I was doing my best to be fully engaged and focused during class discussions, but the pain was undoubtedly distracting. I purchased an expensive seat cushion to bring to class that was allegedly supposed to ease sciatic pain, but it did nothing. About midway through the semester, it finally felt like I couldn't handle it anymore. I went to my advisor, who was more than happy to accomodate me and wanted to do whatever necessary to help. We came up with a plan that allowed me to participate in my classes remotely, which meant that I could work at my standing desk at home, as opposed to sitting. This solution was helpful, but the pain nevertheless persisted.

After completing my master's degree several years ago in Chicago, I was unsure whether or not doing more graduate school was the right path for me. I spent a few years outside of the classroom and worked in the administrative side of academia, but eventually did end up deciding to pursue the PhD application process (which was pretty demanding in and of itself). By the time I started the PhD program, it felt like I had put so much time and energy into this decision (on top of asking my partner to move to a new city), and I wanted to be able to give the program my full effort. To say I was upset that the pain was inhibiting me from being able to do so would be a massive understatement. I knew that I was doing every single thing that the doctors advised, but it felt like nothing was changing.

A recurring intrusive thought that I was actually doing something wrong and that I was directly causing the pain to persist gnawed at me constantly - I am sure that my doctors were exhausted by how in-depth my follow-ups were, and how frequently they needed to provide reassurance that I was doing the right things. An updated MRI revealed that the disc had not re-herniated, but that there was a large amount of scar tissue built up around my sciatic nerve from the surgery. The doctor told me that the scar tissue could take a while to heal - potentially years. Since the pain was still so intense, he also advised that I see a neurologist. He explained that it was possible I had permanent nerve damage, which would explain why the intensity of the pain was still so high. I had an EMG test, which did in fact reveal that this was the case. I was told that there isn't really a clear-cut "solution" for nerve damage - there were different options that we could experiment with, but nothing was guaranteed to work. The first thing we tried was another epidural injection. Yet again, however, I felt no relief from this.

After I finished up the semester in December, everything with my mental health seemed to hit a breaking point. While I had been doing my best to manage the physical, mental, and emotional consequences of chronic pain, I was also in ED recovery, which included meeting with a therapist and dietician every week. The stress of trying to eat more and workout less while being enrolled in a full-time, intense graduate program was extreme. I had previously relied on disordered behaviors (like over-exercising) as a way of coping with stress. Although I knew that the coping mechanisms I had employed for years were unhealthy and ultimately detrimental to my health, not having access to them was only amplifying my stress. I was working nonstop - I didn't take a single day off the entire semester. I would stand at my desk reading and writing for ten hours straight, often without taking a break. Immediately after I finished my last exam, my body completely shut down. I experienced a sense of complete exhaustion unlike anything I had ever felt. I was utterly depleted. Initially, I assumed this was just a consequence of how hard I had worked in school and that I simply needed to give myself a break; however, this sense of exhaustion wasn't just mental - I felt physically run down. The combination of being in ED recovery and having to deal with such severe physical pain for an extended period of time was quite taxing; I genuinely think that my body had reached its breaking point because of the stress it was under. Prior to this experience, I had never really considered just how intense the mental and emotional repercussions of living in constant physical pain could be... It is brutal.

Over the winter break, I had another epidural injection. This time, the doctor inserted it into a different level of my spine and it was supposedly a stronger dose. Yet - as perhaps you have already guessed - this was not successful in reducing the sciatic pain. By the end of January, it had become clear that trying to manage my physical, mental, and emotional distress while also navigating a demanding graduate program was too much for my body to handle. Furthermore, as anyone who has dealt with a health issue can tell you, attending numerous doctor’s appointments takes a lot of time, especially when commuting is factored in. Trying to balance so many appointments on top of graduate coursework was tough. As such, I opted to take a medical leave of absence for the Spring semester - I was super disappointed to have to make this decision, but I knew deep down it was the best thing for me and my health.