How One Woman Reversed Chronic Illness and Broke Free of Being Bed-Bound and Unemployed

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February 2014:

As I lay my head on my desk a tear falls from my eye. How on earth am I going to get through this day? It’s 8:30 a.m. on a Monday. The necessary weekend debrief starts, only to be interrupted by a phone call saying one of the patients is running late. My next eight hours will consist of patients, meetings and hopefully enough time for a toilet break. I’m exhausted, my eyes are burning and I feel sick—but not the usual sick. Something strange is going on. I’ve been so exhausted lately. I push myself to stand up, remembering that I’m not a morning person, and I get started on the day’s tasks. By lunchtime it’s clear that I have to go home. My boss takes one look at me and no conversation is required. I thank her for understanding and say I’ll be back at work in a few days. 

Three months later I call her. We both know I’m about to resign, but neither says as much. We exchange pleasantries and I hang up the phone. 

Panic, fear, anxiety, disbelief, repeat. What is going on? 

To set the scene, I am in my late 20s. A senior social worker by day, a social butterfly by night. I coordinate a program for people with serious mental health issues and live in an apartment with a good friend. For most people, this is the prime of life. No kids or responsibilities—just freedom. But not me. That day three months ago was the last day I was able to get up and take myself to work. Since then I have been basically bed-bound. My couch is five meters from the kitchen. I use the wall to hold myself up and try my best to walk to the fridge without needing to stop. 

Six months later, I’ve been to what feels like every doctor in Melbourne. When I say I’ve tried everything, I mean everything. I’ve been told I have depression, parasites, depression, low iron, depression, mercury poisoning, depression—did I mention depression? But no one actually seems to know. My blood tests are unremarkable. Every time I sit down in a doctor’s office I’m told, “Your results have come back fine,” and I feel the immense weight of disappointment fall over me again. 

Friends have stopped talking to me. The amazing ones still call or drop by, but most have gotten sick of inviting me out and hearing, “Sorry, but I’m just not up to it today,” for the 10 millionth time. When I can pep talk myself into getting out of the house, it’s off the back of resting for the entire day—all for two measly hours of socializing! People try to understand, but how can they, if I don’t even know what’s wrong? “Just have a few drinks and you’ll feel better,” they suggest, or my favorite: “Umm, that’s what coffee’s for. I’m tired all the time.” 

I feel sick every day. I’m nauseous; my brain is foggy; I have a persistent headache; I feel like my veins are full of cement. I wake up each morning exhausted. People keep asking me when I’ll get better. It’s been a year and a half now, and I’ve started to believe that maybe I won’t. I’ve watched friends get married, go travelling, get promotions—and after so long of trying and getting nowhere, I’ve started to feel what the doctors have been suggesting all along: depressed. I’m being held hostage in my own body, and no amount of negotiating seems to be helping me get out of this mess. 

***

Present Day

What I didn’t know then was that I still had another two years of fighting ahead of me. The eventual diagnosis: Chronic Fatigue Syndrome. Do you know how CFS is diagnosed? A fun little process of elimination. You’re tested for every other possible illness, and if the results come back negative then… drum roll…Chronic Fatigue it is!

You can imagine my relief when I finally got a diagnosis. Finally I had an answer. I have a chronic illness that lasts on average two years, and for some people their entire life. Looking back I don’t know which was worse: having to go to Centrelink because I was too unwell to even think about working, or having to convince people I was actually sick because I “looked fine”, why couldn’t I just “get on with it”? 

During a particularly bad week, I was scrolling through Instagram and found CFS Health, a program started by a man named Toby Morrison. He had been through CFS himself, and was using his knowledge to help other suffers get their lives back on track. I got in contact with him and after ten minutes of talking, the knot that had formed in my stomach two years earlier was gone. I felt hopeful. Finally someone listened, understood my world and most importantly, told me I would get better.

Recovery!

That’s when I really started my slow journey of recovery. I began to build my body up gradually by eating well and exercising. I made sure I was having consistent, quality sleep. I started meditating, lay in the sun a lot and—most importantly—I started to look at what got me to this point in the first place. That was by far the hardest part, but boy am I glad I did the work. I am now a better partner, friend, daughter, sister, counselor and mentor because of it. 

So what did I learn?

1.  Our pain is our teacher.

Anthony Robbins asks, “How would your world change if you realized that life was happening for you, not to you?” Without pain, we don’t learn and grow. It is a necessary and inevitable part of life. Pain forces us to look at ourselves and explore those hidden places we wouldn’t usually go. It is our teacher. Instead of wondering, am I always going to be like this? I asked myself what the fatigue was trying to teach me.

2.  We are the average of the 5 people we spend the most time with.

The people we choose to surround ourselves with are so important. Getting sick shone a light on everyone around me, and I didn’t always like what I saw. I lost some of my closest friends, and it was devastating. But I also got to see the amazing ways that some people show up for you when you need them. I had a friend who called every other day to see how I was going. People sent me food when I couldn’t stand up long enough to cook a meal; another friend paid my rent when I was down to my last dollar; my bestie and her husband invited me into their home when I had nowhere to go; and my nearest and dearest would come over and watch movies with me when I didn’t have the energy to speak, but needed some company.

I started watching people’s actions instead of listening to what they said. When your life turns upside down—which at some point it will—the quality of the people around you determines your level of resilience, and your capacity to keep going when things feel hopeless. Choose your tribe wisely. Learn when to hold on, and when to let go.

3.  Boundaries, boundaries, boundaries.

Being in the helping profession means naturally I want to help. But sometimes it was too much. I tried to be everything to everyone, out of some crazy fear that I wasn’t enough. But once I got sick, I had to learn to say no. I had to work out what my bottom line was at work, in relationships, and with my family and friends.  When fatigue reared its head, I was forced to listen.

Setting boundaries is now more important than ever. The fact that we can be contacted 24 hours a day, 7 days a week, means that shutting off is becoming increasingly difficult. I had to learn to put boundaries on my time. It’s so easy to do one more hour of work, answer that last phone call, or send a few emails when you get home from the office. But when is enough enough? When do we start choosing what we do with our time rather than having it dictated to us by our phone or computer?

4. Everyone is struggling.

Whether we admit it or not, life can be immensely challenging. What I don’t understand is why no one talks about it! Why do we all pretend like everything is fine when it isn’t?

Brene Brown puts it perfectly: “For many of us, our first response to vulnerability and pain… is not to lean into the discomfort and feel our way through, but rather to make it go away.”

When I finally started to talk about my experience, people would open up and share their challenges with me. I couldn’t always relate to what they were going through, but they always made me feel better. They made me feel human. We don’t constantly have to have our lives in order. The magic is actually in the mess. Our work is to stop seeing our challenges as shameful and realize that actually, they are one thing we all have in common.

An Authentic Life

Why am I writing this? Because I see so many people suffering in silence unnecessarily. Whether you are navigating parenthood; stressed up to your eyeballs trying to grow a successful business; have lost the love of your life; are battling depression; even if you’re just having a seriously bleak day—we are all bound by the same fears: that we aren’t enough, and people won’t love us as we are. So we hold back our vulnerability, and try to appear fine.

But when it becomes more important for us to maintain the image of a perfect life on social media than to ask our bodies, and the people around us, what’s really going on, we lose touch with what’s real. Our bodies, and our relationships, pay the price. By sharing my story, maybe I can encourage others to see that nobody’s life is perfect. My hope is that we can live our lives more authentically and in doing this feel more connected to ourselves, and the people around us.

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