Diamonds in the making - What it's like living with long-term fatigue
Updated: May 1
Yesterday was a bad day. There was pain. Tears of frustration. Gnashing of teeth. The urge to lash out at those who are closest. Despair that five and a half years in and I’m still having these days.
In July 2017 I called a halt on my corporate career after being completely and irrevocably burnt out. What I didn’t know then was even though my burnout would resolve, it can lead to long-term health consequences. I was diagnosed with Chronic Fatigue Syndrome and still have fatigue in my body that I live with today.
Do you know someone with Chronic Fatigue Syndrome or Long-COVID? Read on to learn what it's really like to live in their world.
What is Chronic Fatigue Syndrome (CFS)?
Fatigue is such a polite word, so gentle and sedate. When we’re fatigued we sleep for a while and then everything is alright again. Right!?
Chronic fatigue is not like that. On a medical level it affects every cell in your body. Our ability to hold on to ATP – our energy molecules – is compromised and it feels like our body is completely emptied of vital life-giving energy. It’s a powerful, heavy wave of exhaustion that demands sleep, but sleep doesn’t help. All sleep can do is provide a little bit more energy so we can keep living.
Whilst sleep is deep and un-refreshing, waking is worse and can be quite painful. It’s a weird pain – an ache that’s deep in the marrow. Brain fog creates a long lead-time between waking up and being able to function or even talk. This cycle of exhaustion wave > sleep > wake/ache is one that fatigue sufferers live with daily.
Now these physical symptoms probably sound awful (and they are) but it’s the psychological that hurts the most. Long-term fatigue is mostly an invisible condition and often hits people in their prime years - cutting down promising careers and ruining lives if you let it.
I’ve had many dark thoughts over the years and these are commonly echoed by others in the same boat. When you suffer a relentless illness and your ability to do the things you once could are compromised, it’s so easy to fall into patterns of despair…
of ever being productive again – ‘Will I ever be able to work/travel/enjoy life in the same way again?’
of having fulfilling friendships and a partner - ‘Who would want me now?’
of even being worthy of living – ‘What use am I to anyone?’.
We need to fight these thoughts as they are a one-way street to misery or worse. But fighting…well that requires energy and it’s ‘expensive’ when you are fatigued.
I now have a number of different strategies that I both use and teach others to help manage these darker emotions.
What does the medical industry think?
Studies estimate between 0.4 - 1% of the population have Chronic Fatigue Syndrome and around 75-80% are female. In Australia, this means up to 250,000 people are living with this condition on a daily basis.
The medical industry is still a bit bamboozled about why people get fatigue. I can tell you this with complete authority based on the multitude of professionals consulted over the years.
I’ve been gas-lit by some who don’t even believe Chronic Fatigue Syndrome exists (what the!?). I’ve been told I SHOULD be better by now when clearly I wasn’t. I’ve also been told some people just never get any better and I’m one of the lucky ones as I am (ever so slowly) resolving.
How can there be so little knowledge and consensus around a condition with such far-reaching consequences?
There is light at the end of the tunnel. What they’re finding is commonalities between long-COVID and chronic fatigue, especially for the unlucky ones who have long-term energy implications from their long-COVID condition.
Whilst I’m devastated for the huge percentages of people with long-COVID (current estimate of ~4.6% with Omicron strain, 80% female), I’m buoyed that the scale of the looming long-COVID disaster has resulted in more resources being spent looking at ways of managing this condition.
It also means less of a chance I’ll be gas-lit when talking to medical professionals -how sad this had to happen for my condition to be taken more seriously.
There are treatment protocols and ways of managing CFS available and I’ve felt great improvement over the years. Sometimes you just need to keep persisting until you find someone who can help.
How can you help?
I get it, you want to help but don't know how. With a growing number of people affected by post-viral fatigue conditions, chances are you will know someone going through this. Here are my top tips for providing support.
1. Listen and believe - Any hidden illness can be so frustrating as we don’t necessarily look sick. The best support is to listen deeply to understand what the other person is experiencing. The fact you have read this far says a lot about your willingness to understand.
The next step is crucial – believe what they tell you! It’s not exaggeration or attention seeking or a lack of motivation….anyone with long-term fatigue is very sick and should be shown respect around this.
2. Benefit of the doubt – Think about when you’re exhausted after a particularly hard day or week – to the point that your emotions are frayed and your body aches. Now think about feeling like this a majority of the time.
It can be difficult being a friend or loved one of someone with long-term fatigue…
You’re used to them always being able to take a call and talk to you, so when they can’t you may feel ignored.
The previously bright, positive, happy friend becomes a gloomy, depressive hermit and might even lash out.
What was previously a reciprocal relationship may need to be more about them for a while as they struggle through their feelings of crisis and depletion.
In these circumstances, such dramatic changes in relationship dynamics can be jarring. You may wonder what you did, judge them harshly and/or be tempted to give them a wide-berth or write them off altogether. But it’s likely they do not like being in this place themselves. Where possible, give them the benefit of the doubt that they are still the same person and need your support now more than ever.
3. Ask how to provide support – Lastly can you ask the question, ‘How can I best support you?’. They might not know how to answer straight away. It’s difficult to understand the changes happening, let alone articulate them to someone else. This is particularly true at the beginning of an illness and with something insidious like long-term fatigue. But having people willing to ask and show support is priceless. Sometimes the answer is to just BE there with them, fully for them, showing up.
There is often no black and white answer and you may find you are able to gradually develop the answer together. Often it’s a series of conversations and action steps that keeps your relationship on-track over time.
The challenge here is there are no quick fixes and fatigue can affect people for many years. You may need to permanently change your pattern of activities, communication style and/or focus of conversations. Even with the best of intentions, sometimes relationships just don’t survive, becoming a regrettable loss.
One final note
For my friends and loved ones, I haven’t always been this clear over the years. I hope this provides you with more insight into where I may have struggled in our relationship.
Chronic fatigue is not something I enjoy, but I often highlight the fact that the last 5 years have become a gift. I’ve adapted and created a life that I love. It’s brought new relationships into my life. I’ve also shared my story and insights with others, helping them navigate their own difficult times.
Philosopher Thomas Carlyle once said, “No pressure, no diamonds“. My time in burnout and beyond has most definitely been a diamond in the making.
Sarah Vizer is the creator of Beyond Burnout.
As a Leadership and Performance Coach she supports our top professionals unlock the high achievement they are so capable of, without the burnout of course!
She offers individual and team support for you and your organisation.
Find out more at www.sarahvizer.com