Finding Freedom Amid Limitation: Living With Chronic Fatigue
Often in life, it’s not so much our aspirations, our desires or even our achievements that define us. It’s our challenges. To a large extent, the way we deal with life’s inevitable challenges determines the person we become.
There are two types of challenge in life. There are those that we can overcome, and those that we must gracefully accept and work around.
The choice, then, is one of transformation or transcendence.
Living with a chronic illness can involve a bit of both.
Some illnesses can be cured, or at least managed. With others, there’s not much we can do but accept it and try to deal with it as best we can. Chronic Fatigue Syndrome, C.F.S., or M.E. (Myalgic Encephalomyelitis) as it is also known, is one such condition.
C.F.S. is something that I’ve struggled with for much of my life. It began after having cancer and chemotherapy as a child. It was then exacerbated by a bout of viral infections including glandular fever when I was a teenager.
The term ‘Chronic Fatigue Syndrome’ is not in itself a diagnosis, but a description of the main symptom. It’s also something which doesn’t, I feel, nearly convey the complexity and severity of the illness.
An Unnatural Tiredness
Everyone gets tired. People often work long hours and lead busy, stress-filled lives. Tiredness is natural. Whenever I used to tell people that I suffered from C.F.S., their response would often be “yeah, I get tired all the time too”.
Well, yeah, if you’re constantly busy, lead a full life, and don’t get enough rest or sleep, then you’re bound to be tired. That’s normal. If an otherwise healthy person gets a decent night’s sleep, they wake up refreshed and ready to take on the world each morning.
The tiredness of Chronic Fatigue is not, however, a natural tiredness. It’s an aching, gnawing fatigue that isn’t necessarily caused by any specific exertion. And although rest and sleep help manage the symptoms, it never goes away.
It’s not just a physical exhaustion but also a mental exhaustion, causing what people call ‘brain fog’. It can become difficult to even think at times, much less hold a conversation or do complex tasks.
It can feel as though you’re fighting with your own body. You might desperately want to do something, but simply can’t. Some people have likened it to ‘being buried alive’.
Living a Half-Life
Chronic fatigue, and indeed any chronic illness can make you feel like you’re living a half-life. There’s so much you might want to do and be, but your own limited energy ensures that no matter how hard you try, there’s only a relatively small amount you can do.
A doctor who specializes in C.F.S. once got me to think of energy as being like money in a bank. Everyone has a certain amount in their account. A healthy person might wake up with £100 to spend each day. If they spend more than that, they go into overdraft and hence get tired.
C.F.S. makes things challenging because the baseline account level is significantly reduced.
It might be that a C.F.S. sufferer has only £60 to spend every day — or on a bad day maybe even only £20 or £10. It, therefore, takes much less energy expenditure before going into overdraft.
I learned that I have to be extremely careful how my energy is spent, particularly if I’m in a ‘low’ spell. I might need to go back to bed every couple of hours simply because I’m too exhausted to function.
I have to think twice about doing things I’d otherwise enjoy because the price is simply too high — not even just because of the exhaustion and pain that follows afterward, but because it could set my overall condition back for a significant time.
With C.F.S., the effects of over-exertion can linger for days, weeks, or even months.
This happened to me a few years ago when I attended a family wedding. I managed to get to about 9 pm but I ended up so exhausted I was unable to even speak to anyone and had to be taken home. Unfortunately, the exhaustion lasted for weeks and caused quite a severe relapse. This was not only physically challenging but left me feeling pretty depressed too.
When you have a chronic illness, the worst feeling in the world is when you think you’re getting better only to find yourself back at square one again.
A Sense of Shame
Living with such a condition is an almighty challenge in itself. With Chronic Fatigue, things are made worse by the fact it’s such a misunderstood, and sometimes maligned condition.
In the 1980’s, it was dismissed by the media as “yuppy flu”, a disparaging term which related it to young professionals suffering burn-out after working and partying too hard.
With precious little funding put into the condition, and scientists unable to pinpoint a cause, many doctors even refused to acknowledge it as a real condition. Some ‘experts’ dismissed it as a purely psychological or psychosomatic condition.
It’s only recently that scientists appear to be making breakthroughs.
It has now been shown to be a very real physical disorder caused by cellular and immunological imbalance. Studies are ongoing, but hopefully, treatments for C.F.S. will soon be found. Indeed, trials are now underway in Norway using anti-cancer drugs that may help deal with the underlying dysfunction.
The damage has been done, however. Among the general public, many people still question whether C.F.S. is even a real condition. With a naff name like ‘Chronic fatigue syndrome’, it even sounds like a bit of a joke.
As I learned myself, the stigma surrounding the condition can add a whole other element of suffering.
I became almost ashamed to tell anyone what was wrong with me. When you get responses like “well, you look well enough,” and “I’ve been tired lately too”, you end up feeling frustrated, misunderstood, and pretty darn embarrassed.
I quickly came to realize that most people don’t understand something they’ve never experienced themselves.
I only went out and saw people when I was feeling fairly good. So, aside from immediate family, people would only ever see me at my best. They wouldn’t see what happened if I got back home and collapsed on my bed and couldn’t move for hours.
I’m pretty sure that some people, including certain friends and family, thought I either wasn’t sick or was exaggerating how bad it was.
It maybe didn’t help that I rarely spoke about my condition. I was determined that I didn’t want to be seen as sick, much less bore people by complaining about being tired (whoop-de-doo).
I didn’t want pity, and I didn’t want to be judged as being some kind of lazy-ass faker, which I’m sure some probably thought anyway. I actually remember one friend asking, “Can you just not be bothered?”
Because of this fear of being judged, and the fact I found social interactions rather exhausting, I tended to withdraw. My confidence crashed and my self-esteem plummeted as my old life gradually began falling apart. A long term relationship ended, I had no social life, and most my friends began moving away from the area.
I retreated into my shell and closed off from other people and the world.
Healing as a Hero’s Journey
In retrospect, I think this was probably a necessary part of the healing process. It was painful, and yet over time, I learned a lot about not only how to deal with my condition, but also about myself.
This was the start of my healing journey — or perhaps what Joseph Campbell might have called my hero’s journey.
Campbell outlined the ‘Hero’s Journey’, the timeless motif which pervades all the greatest stories ever told, as one of transcendence and transformation.
In life, we’re each the hero of our own story.
Something happens to shatter our old life as we knew it, and we find ourselves in new and unfamiliar terrain. We then must learn to navigate this changed landscape and face many challenges — challenges which, when surmounted, add to our strength, knowledge, and power.
We must face death, if not in a literal sense, then a figurative one — the death of the old; our old lives and our old selves. Only from death can we be reborn. Certainly, it’s often not until adversity strikes that we discover the true measure of our power.
From my journey with Chronic Fatigue, I learned the necessity of taking charge of my health and my life.
Since doctors were of only limited help, I devoted my life to finding ways to make myself better, or at the very least, ways to help myself cope.
I learned the vital importance of managing my energy wisely. Our time in this world is finite, and there’s only so much we will ever be able to do. When your energy is severely restricted, it forces you to focus on what is truly important.
Finding freedom amid chronic fatigue meant I had to take my health more seriously.
I spent time refining my diet and I made sure I exercised to whatever capacity I could without making myself feel worse.
Being in nature was also an essential part of my healing process and was nurturing for body, mind, and soul.
Next, I learned the importance of relaxation and rest. This is necessary for anyone, but when faced with a chronic illness it becomes absolutely vital.
Pacing is one of the number one ways of managing chronic fatigue — alternating activity with periods of rest, and adjusting each according to your energy levels that day.
Taming the Mind
One of my greatest challenges was to deal with the mental and emotional ramifications of living with this condition.
I recently found an old journal from 10 years ago and I was shocked at how much I was struggling, not just physically, but psychologically.
To a great extent, it’s not what we’re facing in life that causes us to suffer — it’s our resistance to what we’re facing.
I was extremely resistant. I was full of both desperation to get better, and shame at being only ‘a pale shadow’ of the person I thought I should be.
My greatest achievement in life has been learning to tame my own mind, enabling me to overcome a lot of deep-rooted psychological suffering.
Finding freedom without control over the mind and emotions is almost impossible.
I studied psychology, self-help and found a number of tools and techniques for dealing with negative thoughts and emotions, eradicating self-limiting beliefs and basically making my mind work for rather than against me.
Furthermore, I came to see that self-liberation doesn’t come from simply trying to rearrange the circumstances of our lives.
If we need things to be a certain way in order to be happy, then we’re not free because we’re dependent on those things being the way we want them — and when they’re not we suffer.
Instead, liberation comes from learning to release the many layers of resistance that we hold: the tensions that keep us from living, appreciating and enjoying life as it is NOW, both the good and bad (which are as inextricably connected as day and night).
I’d always had an interest in spirituality and meditation, and being ill gave me the opportunity to throw myself into this pursuit. Initially, it was perhaps a bit of an escape from the challenges I faced, but it ignited something deeper in me and became my passion and purpose.
I had a burning desire to know and understand existence, consciousness, and reality. I was particularly drawn to Eastern mysticism and I was led to yoga, Taoism, Zen, and eventually Advaita Vedanta, which was like coming home for me, and which completely changed my outlook on myself and life.
I learned so much, and it wasn’t simply intellectual or ‘book knowledge’. It is wisdom that I have applied to my life and circumstances and have used to help free my mind and heart.
C.F.S. is still something that affects my daily life, and I must continually be vigilant as to how I am spending my energy and the amount of rest I am getting.
It can be a royal pain in the ass, but I refuse to let it (or anything else) define or limit me. It’s simply something I acknowledge and navigate around.
Our Gift to the World
I’m no longer ashamed of having it. In fact, I’m proud of having gotten as far as I have.
We are not losers simply because we can’t do all that we might want, and all that maybe others can. We are warriors. With the heart of a warrior, we take our limitations and fight to achieve our dreams and fulfill our purpose in spite of the obstacles.
I’ve learned the value of slowing down to appreciate the life around me, and out of necessity, I’ve developed the discipline to use my life energy wisely and to focus on what matters most to me. To this day, I have written two critically acclaimed novels, a book on the Tao Te Ching, several blogs and numerous articles and essays.
Through adversity, I’ve learned so much. My mission is now to share what I’ve discovered and the tools that have helped me, in order that they might help others too. This I have done via my books and my website, unbrokenself.com.
I believe we’re all on our own hero’s journey. We’re here to take the challenges life brings us and find ways to spin them into gold.
We are all alchemists. With the right understanding and skill, we can turn adversity into triumph, lack into gain, fear into courage, pain into joy and suffering into liberation.
Our gift to the world is then to share this with others. In finding freedom for ourselves, we can help heal the world.