Lessons from ME/CFS: Finding Meaning in the Suffering

Andrew Gladman muses upon what lessons he has taken from two years of ME/CFS.


If you’re aware of my previous articles here at Phoenix Rising  then it’s pretty clear that I don’t generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write about it.

Every now and then, however, I like to dip my toes in and test the waters per say at the other end of the spectrum.

Recently I’ve been musing upon what my illness has taught me about myself and the greater world we live in. I’m not a believer in the notion that ‘everything happens for a reason’, even though I can see the comfort such a notion gives.

That being said, while I don’t believe that everything follows a set course I do think that we can ourselves find meaning in the experiences we have.

It’s often said that we are nothing if not the sum of our experiences, and if nothing else I’ve certainly had a lot of unique experiences in the past two years!

Only now that I’ve recognised a definite improvement in both my physical health and emotional stability do I allow myself to reflect upon what has been undoubtedly the most turbulent, uncertain and likely worst years of my life to date.

I never let myself do this previously to avoid the unbearable sense of loss that I’m sure many people in a similar situation to myself have felt, not just of lost health and lost well-being but moreover the lost years and experiences.

Earlier on during my disease I threw myself wholeheartedly to the whim of my doctors. I needed any help they had to offer and, of course, I was referred to see a therapist for cognitive behavioral therapy. I’m very critical of this therapy now with regard to its effectiveness in ME/CFS, but at the time anything was better than nothing, so I attended a session.

Quite early on it was clear that this wasn’t going to help me all that much. My therapist was quite young but she seemed much more astute that most.

At the end of the session I was discharged. She discussed with me how my life had changed and clearly recognised that my problems were physical and that this therapy was not going to work for me.

I find it somewhat humorous to recall the stages I’ve gone through while being ill. In the moment, it’s unrecognisable but now looking back I recognise the clear stages of grief that I went through, something I had previously thought was reserved exclusively for the dying and grieving.

The initial denial of ill health, the anger over the problems you’re facing, the bargaining — promising to be a better person in exchange for a cure, and the depression that follows the weight of problems you now face, leading to the lost sense of caring both about yourself and the greater world around you.

Only in the last couple of months can I say that I’ve accepted my disease and the limitations it imposes upon me.

Unfortunately, acceptance is likely only possible once a degree of improvement has been reached. The trouble then lies in that improvement is often limited at best for those that suffer with ME/CFS, so it’s difficult to escape the weight of depression that such loss imposes.

It’s very important to note, however, that the depression comes as a result of the life-altering disease and not the other way around! I think the natural course of this ‘acceptance’ is the musings I now find myself making.

Lessons learnt

I asked myself then, “What have I learnt in the last two years since becoming ill?”

It’s very difficult  in the moment to comprehend much of anything that happens around us.  Indeed, only the luxury of hindsight can treat us to such things.

For instance, I know now that my initial notion of health care as a magical place that cures people of any ailment is far from the reality.

Doctors these days are very good at treating what they understand. A broken leg? No problem. Diabetes? Easy! Even cancer is on the losing side of a plethora of research that looks set to have the disease on the ropes in the coming years.

Why then is ME/CFS proving such an enigma? Why have I had to endure doctors telling me that I just need some sunlight, some vitamins and some therapy? I suspect that it comes down to the modern world, a democracy that demands answers, moreover certainly, to everything in life — even where there aren’t yet any.

Further to this, I’ve found a field that I know, health permitting, I wish to work in and do my best to help.

Before my illness I was something of a typical teenager with no real plan for future employment other than attending university. I know now that when I do return to university my aspiration is to get into ME/CFS research through a biomedical degree. A high aspiration for someone with ME/CFS but hopefully one I’ll be able to achieve!

Another lesson that I’ve had to learn the hard way from ME/CFS is that of not pushing yourself too far. Prior to my illness I was without doubt an overachiever, always pushing myself to do the best I could and striving single-mindedly towards goals.

While this all sounds like the ideal mentality, in truth I  recognised even at the time that this took its toll on not only my social life but sometimes even my well-being — even at a time where I was in perfect health.

From ME/CFS and my experiences while learning pacing, I have learnt that sometimes doing just enough is okay, not everything needs 100% effort. These are hard lessons to learn, given that they are against your very personality. But I can say that I’m perhaps a happier person now than I had been even before ME/CFS.

It’s all too easy to lose hope when suffering from such a terribly misunderstood and life-altering condition. Many times in the past two years have I broken down at the thought of my life going forwards.

It’s only when something so life-altering happens that you realise how good you had everything before. To dwell on times gone, however, is never going to help your health and certainly not your emotions!

When something so terrible happens we have to try our best to at least take away something from it, a lesson that puts everything into perspective. A lesson learnt is not going to suddenly cure you of illness but it’s that little something that can keep your spirits up even in the darkest of times.

Feel free to share the lessons you have learnt from living with ME/CFS and any musings you find yourself experiencing.

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