A Recovery Story: From Life-Altering Chronic Symptoms to Living a Full and Beautiful Life

This blog comes from Steph McCallum, friend of Living Proof who shares her inspiring story of recovery from debilitating head pain, POTS and ME/CFS.

Life interrupted just as it started

I feel like, at 25, my life only just truly started. The good part, anyway. 

The home I grew up in had a lot of violence. 

I pushed myself extremely hard academically, because it was one of the only things that gave me validation in life or recognition from my parents. Once I graduated high school, however, I was completely lost. I couldn’t keep up with university or manage a normal social life. I didn’t understand why everything was so hard for me, and I blamed myself for a lot of it. 

Steph McCallum

The beginnings of my chronic symptoms

When I was 21, I got into an emotionally abusive relationship and that was when my headaches, which I’d had for many years at this point, started to get a bit worse. I thought it was just eye strain, but my optometrist saw that I had increased pressure in my brain and I got sent for an emergency MRI. I was diagnosed with idiopathic intracranial hypertension (IIH) and Chiari Malformation I. 

My symptoms got a lot worse after the diagnosis and I was put on a diuretic to drain the fluid from my brain. I noticed that although my typical IIH symptoms got better, the side effects of the medication were so severe that my quality of life didn’t improve at all. I was just as debilitated but just in a different way. 

A storm of symptoms

The following year was a flurry of unrelated but all equally terrifying symptoms. Dizziness, nausea and reflux so bad I couldn’t eat, food intolerances, allergic reactions, high heart rate, phobias and panic attacks, fatigue, exercise intolerance, heat intolerance, depression, shoulder pain, neuropathic pain, many different types of headaches, air hunger, brain fog, pelvic pain, numbness and tingling in extremities, and more that I’m probably forgetting now. 

The strangest one was the insatiable hunger, which felt like episodes of low blood sugar but my readings were always in the normal range. I would be shaking, confused, had blurry vision, and be so starving I literally couldn’t eat enough to feel okay. And then, after I had eaten too much, this would also cause symptoms. It felt like I couldn’t do anything right. 

Seeking a solution: hopes raised then dashed

Even after I left the abusive relationship, my symptoms continued. This was devastating for me, because I’d had such a strong feeling that the reason for me being so sick was related to the stress of my relationship, but clearly it wasn’t because I didn’t improve after it was over (that’s what I thought, anyway). 

My life got smaller and smaller as I gradually got sicker. I worried all the time about what this meant for my future. One of the happiest days I had during this time period was the day I received my POTS diagnosis. I had fought for this diagnosis for months, and I was overjoyed to be validated in my pain by a doctor. But that joy slowly faded away as I tried medications and nothing worked. I continued to be just as sick as I always was.  

Pushing through… until I now longer could

Through a mixture of denial and determination, I kept working. I was doing care work, and this often involved lifting and bending, both of which were really hard on me. I didn’t tell anyone at work that I was sick, I just kept going. I felt like my ability to keep working was a sign that I wasn’t ‘sick enough’, and my illness wasn’t a valid thing to be upset about. But if I had actually cared about myself, I would have stopped working much much sooner than I did. 

I had a particularly bad POTS flare in June 2024, which left me barely able to walk. I thought it would get better, like my flares always did, but this one didn’t. One morning I woke up and I literally couldn’t get out of bed. This was when I started to think this was more than just POTS, and possibly ME/CFS. After being chronically ill for several years and involved in the online communities I was very familiar with ME/CFS, and it was my biggest fear. I thought, ‘If this is what I have, my life is over’. 

I went downhill very fast. Within two weeks I was 90% bedbound. Going to work was out of the question. I stayed that way for the next 8 months. 

 

Desperately trying to find a way forward

I gave myself a very strict pacing plan which involved using a stopwatch to time how long I was spending out of bed each day. I considered it a ‘successful’ day if I could keep it under an hour. This wasn’t about my actual capacity, but about trying to limit what I did as much as possible in the hopes that my capacity would gradually increase. It didn’t work. On my worst ‘crash’ days I was unable to manage more than 30 minutes. 

Every single crash that happened was devastating for me. It never got any easier to live in a body that could barely move. I couldn’t tolerate light or the presence of other people, so I spent a lot of this time completely alone trying to manage everything by myself. 

Because of my lack of support, I wasn’t able to easily access doctors while I was sick. This was something that I would have needed help with, and I felt really unable to ask for that help - and trust that I would receive it. I had never come across a doctor (except for one) who was kind and validating about any of my chronic issues, so I had very little hope that anyone from the medical world would help me. 

So I was mostly searching for answer online. I paid a lot of money for a program that promised to heal my fatigue through meditation and brain retraining. While I liked the meditations, I struggled to believe that it could have any impact on my symptoms, and this course did a really poor job of explaining it. I left it feeling scammed, because it didn’t help me, and from then on I felt very sceptical of anyone who was selling a course or promising ‘magic’ cures. Plus, in the ME/CFS community there are a lot of people who want to warn you about the scammers; it was a really common thread to hear names like Nicole Sachs followed by a bunch of people saying she was a liar and a scammer.

The months went by slowly. I lived in a weird bubble of denial. Every time I felt a little relief from the symptoms, I was convinced that I was going to get better, and then when it came crashing down I was convinced that I would be this sick forever. 

Finding Dr John Sarno’s work: a glimmer of hope

After a really bad crash, I was looking through Reddit and searched something along the lines of 'has anyone recovered through somatic methods?', and I found one person talking about John Sarno and that he often gave lectures to his patients and they would actually recover just from that. Just from knowledge. This caught my attention, and I immediately found a lecture of his on YouTube and watched it. (I had to take breaks because my brain fog was so bad I couldn't watch TV without feeling like my eyes were going to twist together inside my head). Dr Sarno only mentioned chronic fatigue one time in the whole lecture; the rest of it was about back pain, but I was totally enthralled. There was something comforting about the fact that this was old, like a pre-internet thing, and that it was coming from a doctor. I refused to google him for weeks because I didn't want anyone to talk me out of it, I just did exactly what he said to do in the lecture. 

Separately, I had also heard about JournalSpeak. This is a stream-of-consciousness journaling practice designed to unveil repressed feelings. I didn’t know anything about the history of it, but I’d heard about it helping people so I thought ‘why not?’.

My symptoms very, very slowly subsided. After about two weeks, I felt a bit more open and curious, so I decided to look into this a bit more. I found out that Nicole Sachs was the inventor of JournalSpeak and she had worked personally with Dr John Sarno; my mind was blown. So I began listening to her podcast every day. 

Exploring the neuroscience – and applying it to my symptoms

Once I learned about the combination of repressed emotions and conditioning that can set the scene for chronic conditions, I stopped being afraid of my symptoms. I understood that there was no danger, my body was not damaged, and I didn’t have to pace or rest excessively in order to get better. 

I had a lot of emotional releases, I was holding so much anger about my life, my childhood and my illness. About the fact that I became ill so early into my adulthood, and I never got to have the life I spent my whole childhood waiting for. It was a tragedy. I let myself feel that to the fullest extent (which was terrifying, because I had no idea how to manage my own emotions and they were so big). But I just kept listening to Nicole, because I found her so comforting, and I just kept going. 

The two things that I believe contributed to my illness were the ideas of ‘I can’t do anything right’, and ‘I’m not allowed to stop’. I developed these false core beliefs from my childhood experiences and played them out in my life and all my choices. They caused me constant fear, which I never had time to process because I didn’t believe it was okay to stop and focus on myself. Through JournalSpeak, I started reprocessing these messages, convincing myself that it was safe to make mistakes, that I was not in fact making mistakes constantly, and that it was okay for me to take my time to heal. I had never before given myself a break, and ME/CFS forced me into one that didn’t feel safe. I learnt that I can rest even if I don’t feel fatigue. I can take a break just because I want to and that’s okay. 

Getting back to life

I started to challenge myself in little ways. I would test how long I could keep the blinds open for without my light sensitivity kicking in, and then I tested how long I could stand up for, and how long I could go without napping. Occasionally, I would just drive myself to the shops, buy one thing, and then go straight home (this was sooooooo scary). 

Eventually I gave myself the challenge of leaving the house every day for a week, then I started volunteering. I started with 2 hours shifts in an op shop (thrift shop/second hand store), and very slowly built up until I was working 8 hours days. From there, I got back into the workforce and I've just been able to live a full, beautiful life. 

What life looks like today

I no longer have any chronic symptoms. I occasionally have minor symptoms like headaches and stomach pain, but it’s never chronic. They don’t scare me anymore, so they don’t stick around.

I genuinely have no idea where I would be if I hadn't found this work. I've had so much trauma that this illness just felt like the cherry on top of an awful life, but now I see it as the beginning of my new life. It was the crack where my light came in. 

I feel like this has prepared me to live my life without fear. I've always been so terrified by the concept of randomly putting my back out and being in pain for the rest of my life, or getting Covid and then being ill for the rest of my life. Now, I don't have to live with that fear at all. I can do whatever I want, and I know I can recover from almost anything.

Steph living her full and beautiful life