On Being Ill.

When being unwell becomes chronic.

Illness is a strange beast. As is wellness. With the wellness industry growing bigger every year, the art of maintaining ones healthy status is a lucrative business, and something to be desired. Who. But what if you aren’t? What if you do not keep well? What if you are chronically unwell?

Wellness is, in my experience, is more than just a desired state: it is a matter of pride for some. ‘I am never ill’ a proportion of the population declare, as if they will be handsomely rewarded in heaven for this. ‘I never take medication’ they proclaim, as if there is some kind of annual award ceremony honouring their abstinence. ‘I never go to my doctor’ is the proud mantra. My friend, let me tell you, not going to see your GP does not necessarily mean you are not ill. Perhaps you are so out of touch with your own body’s screaming warning system that you are not heeding it. Ignoring symptoms is not the same as not having them, and denial of ailment does not wellness make. These types of people typically go on to have a breakdown, either mental or physical, forcing them to take time off work which they will claim they never saw coming, they never expected. That is not being well, that is being blind.

That’s not to say that we should all be in at the doctor every week getting every little anomaly checked, goodness knows the NHS is stretched enough. There has to be some kind of balance. There is of course a portion of the population in between these extremes: not frequently ill but able to admit when they are and also able to take the headache medication without a fight when it is required. We ought to, as a society, be able to listen to our bodies. Symptoms are a physiological alert system. They exist only to inform us there is a problem. To ignore that fundamental process is foolish. I realise capitalism is not set up to support this thinking, but please, heed me.

We all ought to be able to rest when the body requires it, without guilt or shame, and without financial implication. Rigid absence policies means that those with rampant contagions to bring them in to the work place to share around, which is far from ideal. And that pervasive ignorance which ought to have been eradicated following the Covid pandemic: just because your immune system can cope with a seasonal virus does not mean your co workers or their close circle is able to. A pig headed insistence on carrying on could be a cause of death for someone else, and this is not an exaggeration. Is capitalism to blame though? Is this where these aggressive wellness attitudes come from, and the disdain and disgust for the chronically unwell?

Illness is an inevitable part of human existence, and whilst taking reasonable steps towards maintaining a healthy lifestyle is a good thing, it is naive to think this strategy is impenetrable. It is also important to recognise that a quest for wellness can become obsessive or damagingly restrictive very easily. Nobody is going to be made a saint for appearing to have a robust physical condition. Two paracetamol is not going to put a blight on your flawless analgesic record, rendering you out of the running for Human of the Year Award. Why then is there so much stigma, aversion and antipathy for the chronically unwell then? I have observed this phenomenon in my career as a medical professional, in my past 8 years specialising in disability and from my own experience as a sickly person.

I have always been fairly prone to illness. I was a sickly child. I was hospitalised for pneumonia and a collapsed lung before the age of 8. I have had pneumonia another two times, covid five times now. I had glandular fever as a teenager and my first foray into fatigue type illnesses. I pick up viruses very easily and take increasingly longer to recover from them. Over the past year I have witnessed my health failing me more than ever before: slowly, but repeatedly and systematically. I have had a succession of unexplained illnesses since last January which come and go without explanation or obvious pattern, including but not limited to: fatigue, widespread pain, limb numbness, food sensitivities and, most recently, wheezing and shortness of breath on exertion. They flare up and down, come on without obvious cause or link and slink away just as confusingly. I have had multiple clinical tests which have shown nothing remarkable and been told repeatedly that this is ‘reassuring’. I have attended A and E and visited my GP more times than I can remember this year. Most recently I have been told that my respiratory symptoms are psychosomatic and will ‘probably resolve quite soon’.

It is not reassuring in the slightest but there is a certain portion of society, and unfortunately this seems prevalent in the medical field, who believe if they tell you how to feel it will follow that you will comply. You probably know the type. They will tell you there is nothing to worry about when you have the bravery to admit you’re feeling anxious. They will tell you you are fine when you say you’re not feeling at all well. They will tell you that your symptoms are not a sign of anything and that they’re not concerned by the hell you are living in every day. Where does this cavalier lack of empathy come from?

There has long been established a link between psychological trauma and chronic illness. Despite this, one’s psychiatrist and one’s immunologist will never meet up to discuss. As Gabor Mate has observed in his book “When the Body Says No”, the more specialised a physician becomes, the less holistic the practise. And that is not a good thing. We seem to have lost touch with the body as complete and interconnected system. Holistic care seems to have become exclusively under the remit of non medically trained alternative therapists. There’s something wrong here.

In my personal, and unfortunately also in my professional experience, I have observed that at time of writing it is almost impossible to get treatment, diagnosis or even a shred of understanding when asking for help for unexplained chronic illness. But I have not been advised what to do with the information that my illness is psychosomatic. As I said, I know the NHS is stretched. It was shuddering on its knees over a decade ago before I left its employ, before the Covid pandemic. But nevertheless I feel let down and unsupported. My test results do not indicate imminent death, therefore I am not eligible for help. But nor am I signposted to any alternative support. No wonder more and more people are turning to Etsy Witches and bogus Instagram health scams. I am not far off it myself. And no harm to alternative therapy, it is not without merit, but it is a confusing and vast industry that is not always well meaning in intention. It is difficult to know where to start.

My symptoms did not magically disappear after I was told they were psychosomatic, and my mental wellbeing and self esteem took a battering. I doubt myself. I feel like a fraud. I start to wonder if I am imagining it all, or worse manifesting these symptoms in a bid for...what? Sympathy? Empathy? Attention? If so from whom, for I am not getting any of those things. I am not getting anything positive out of this. I feel shit most of the time and have to make gargantuan effort to function normally. I have to pace myself; if I overdo it I will be fatigued and sore. I have to limit my activities, for trying to complete too many will increase symptoms. Let me make this very clear: nobody wants to be unwell. It is not a choice, I do not want this. So why are those with unfortunate immune systems treated and portrayed as lacking in character and possessing weak moral fibre instead of being offered help and support?

Virginia Woolf wrote her essay ‘On Being Ill’ in 1925. She wrote of the loneliness and vulnerability of illness and she wished to establish illness as a serious topic in literature. She also spoke of the disconnect between treating mind and body within medicine. One hundred years later shockingly little has changed. Woolf struggled with her health all her life, physically and mentally, and eventually chose to end her life by suicide. Many a misunderstood, unwell person has died by suicide. What does it take for society to take illness seriously? If we ignore people who are crying out for support, we push them to die alone by suicide. How is this happening in the civilised world? Chronically unwell people are often accused of attention seeking. But is it any way surprising that someone might be seeking attention, acknowledgement, after being turned away, fobbed off and demeaned whenever they ask for help. If we change the language from attention seeking to support seeking, it makes it more understandable. There is absolutely nothing wrong with seeking out support. What is wrong is turning someone away when they are at the limits of despair.

I have been experiencing insomnia lately. It is deepest, darkest, winter, and all of the most sensible literature is pointing toward resting and restoring. Sleeping deeply, as long as the body desires, through the darkness and patiently awaiting spring. I however have found myself wakeful and disturbed of a night, and waking long before dawn. So I have been getting up and going for pre dawn walks, getting moving before I am cruelly confined to my desk by my own life choices during the most prominent of daylight hours. It is a wonderful privilege to be outside at such an hour and I cherish it. Very few lights are illuminating the houses I pass, and where they do my creative brain wonders about the lives of those who are up as early as I. Are they getting up for work? Have they young children? Or are they fellow insomniacs? I have had nearly a decade of being prescribed sedative medication at night time. I had forgotten what it is to lack sleep, that most fundamental of restorative practices.

The familiar forest trails I walk along are changed with the darkness. I walk past the field of ponies and they look at me, perplexed by my incongruous early presence, question if I have brought hay, and go back to dozing once they confirm I have not. I hear the cockerel each morning I pass by the stable yard. I fantasise the cockerel sees me as the signal to call the dawn, as if I wake him up on my way past and he decides he better get to work. I continue to the stream and listen to the babbling water. I try to meditate, if only for a minute. I love the peace of the world at this hour, I feel I have it all to myself. Until a dog walker, and it is always a dog walker, disturbs the idyll whether by screaming their pet’s name futilely and repeatedly as it steadfastly ignores them or by having a conversation with a fellow at the absolute unnecessary top of their voice. What is is about owning a dog that compels such uncouth and obnoxious conduct I wonder.

But I love it all, and I am happy to be alive, and if I don’t go out and experience all of that first thing I am horribly depressed all day and unable to shake it off. So I commit to this practice for as long as is necessary. Then I come home and write about it. Which helps. I do not know what the future holds for me and my health, but I suppose none of us do whether ill or not. I have the choice to listen to my body’s signals or ignore them and I am grateful to be in the former camp after many formative years in the latter. I have been the person who ignored my body screaming that something was wrong until my mid thirties, which is why I feel comfortable condemning it so spitefully. I refuse to go back there, even if it means collecting various undesirable labels. But it would be cruel to end this piece without compassion.

My former self was in survival mode. Many others are too, usually without realising it, to some degree or another. Primary care givers, society and the media are not kind about illness. There is a generational element too: in my day we had to get on with it so you should too, as a prevailing attitude. Well actually this is 2025 and that is not true. I am sorry your generation had to go through world wars, poverty, wilful ignorance and denial as a coping mechanism but we know better now and we can do better. And each generation after you is doing better and better, and rewriting the harm passed on by the boomers.

Therapy has never been more accessible. There are more self help books than you could imagine specialising in every sub genre of human, and more on the way. Which is wonderful. We have never been more able to work on ourselves. An attitude or mindset of ‘that’s just the way I am’ no longer washes. There is no excuse for not being progressive. If you are not growing, then you are being wilfully ignorant and I find that hard to accept. I want better for us all. We can work together to improve the world for the future, but it begins today, right now, with ourselves. I will never be finished with self development. There will always be more to learn, more to change. Life is never static and never will be.

I might never be a robustly healthy person. As I said, I have always been sickly, prone to illness. I believe, and there is much literature to agree, that I have been physically affected by the traumas I have survived. I suspect this is the cause of my ailments and I have to conclude that this is possibly how my life will be now. And I am probably going to have to learn how to manage and live with this by myself, without formal support. I would very much like for society to give the chronically ill a break and some compassion. It is hard enough to cope with as it is. I don’t think that is too much to ask for.