We look at the various concerns that can emerge when we, or someone we are supporting is, diagnosed with an illness.

Old lady with nurse

Our health is one of those aspects of life that we tend to take for granted until it is threatened. Being diagnosed with some form of illness can evoke all kinds of reactions.

 

Uncertainty

By its very nature, the many variables within an illness – such as how we will respond to treatments and the side-effects of drugs – means that the way is sometimes tentative and there is an element of uncertainty. Not-knowing can shake our sense of being in control and of having solid ground beneath our feet.

Your uncertainties might be framed in questions such as:

  • Is my doctor competent? Is my diagnosis/prognosis correct? Am I taking the right approach (e.g. allopathic versus complementary or a combination of the two)?
  • (When the illness is serious) Will I recover?
  • How will my family/business/colleagues/pet manage without me whilst I’m ill?
  • Can my financial situation support a prolonged illness and associated medical bills?
  • Will my friends and family continue to support me through a long illness?

 

As the illness progresses, certain issues may be heightened or begin to emerge. They may include…

 

Loss of control and independence

Loss of autonomy is a feature of being very sick and/or dying that will only increase as the illness progresses. It is inevitable as we become physically weak and, unfortunately, nursing and medical staff tend to endorse an attitude of dependency.

 

The relationship with those whose care we are under can present challenges

“Sick people are often infantilized, women especially. Doctors and others often talk about us as if we were not there. If we make a fuss, we are not being good patients… The message a patient gets is to keep your fears to yourself and put on a good face…. You are not to be angry. You are not to question authority. You are now in the underworld of fears but you are not to mention it. If you are angry or self-pitying, if you become emotional, if you want doctors or nurses to pay attention to your feelings, you are being a problem.” [1]                                                                          

Dr Servan-Schreiber, a neuro-psychiatrist having just been diagnosed with a Stage Four brain tumour, writes of the ongoing challenge of long-term illness:

“You wage innumerable tiny battles. You get up, you eat, you try to stay comfortable despite the headaches, the nausea, the injections and all the other physical pain; you have to find the strength to speak, to listen, to stay connected. These are minor battles but as they follow relentlessly one after another, they demand all your attention. And then there are the more important battles: the medical tests, the anaesthesia, the operation. You devote whatever strength you have left to the most essential thing of all: safeguarding your relationship with your family….” [2]

 

Feeling out of Touch, Lonely and Alienated

Our relationship to the world we once inhabited – of healthy, fully-functional, active members – inevitably changes. It is almost as if we belong to a separate species now.

“The sicker you are, the lonelier you feel, and the more anxious and depressed you become…. Even if sometimes you have to give up your lifestyle from ‘before,’ as a patient you need to feel that you’re still part of the club – the club of the living, of people who do things and get on with their lives.” [3]

 

The relationship to our bodies

It’s understandable if we feel let down and humiliated by our bodies. This can be especially challenging if we have invested our image, our sense of worth and meaning in having a healthy, youthful or beautiful body.

 

A changing sense of self

Passing through a grave illness can affect a major change in us, such that we may never be the same again. It can cause us to question the very basis of who we are without the support of all the external things we have used to help construct our identity.

[“As a patient, I was now]…entering a colourless world, where people were afforded no recognised qualifications, no profession. A world in which nobody was interested in what you did in life, or what might be going through your mind. At a dinner party one evening, my oncologist at the time – a brilliant specialist whom I liked very much – also turned out to be a guest. I saw him turn pale, then get up and leave after some vague excuse. Suddenly I had the feeling that there was a club of the living and I was getting the message that I wasn’t a member. I began to feel frightened that I was in a category apart, a category of people defined primarily by their disease. I was afraid of becoming invisible…afraid of no longer existing even before.” [2]

 

The need to find meaning

We are hard-wired to make meaning of whatever we may be experiencing. This may include efforts to understand why we are ill, and may be part of trying to come to terms with the drastic changes in our daily lives, our loss of autonomy and our disrupted sense of identity. For those with a sense of connection to some higher power it may raise questions around judgement and punishment, trust and surrender, or it may be experienced as an opportunity for inner growth.

 

Resignation and Acceptance

Though they may appear to be the same, these two states are quite different. When you have resigned yourself to a situation it’s with a sense of giving up, of having to capitulate because ‘you can’t beat it’ and there is no other option available. It may contain anger, disguised as sadness, and a sense of futility.

Acceptance is an understanding, deeper than simply an intellectual one, that ‘This is it.’ There may be some grief – you need to be able to let go and say goodbye to all that your life has been up to now – and there may be regret about some aspects, a sense of incompletion. It’s helpful if you allow such feelings to be expressed.

 

The Impact of Hospitalisation

The move from home to a hospital or care home inevitably means we need to adapt to a very different environment – both physical and psychological.

* We might be spending long periods or all of our time with professional carers, possibly in an unfamiliar environment. This might provoke concerns such as:

  • Am I able to communicate my needs effectively?
  • Are my needs being met?
  • Do I feel safe and respected?
  • From being regarded as a loved and valued individual or family member we are now identified as a patient, a ‘case’ or a bed number. Over time we may feel alienated and out of touch, outcasts from the society of the active and healthy.

Our self-image as our being always in control, robust and independent, as lovable and physically attractive, might need revising. If our sense of self-worth has been invested in such an image, that too may need reviewing. On the up side, seeing the frailty of such notions about who we are can initiate an inner enquiry into the reality beyond all ideals and roles.

  • There’s some loss of autonomy inherent in being dependent on any institution, and perhaps none more so than a hospital, as others decide when we will sleep, wake up, eat, use the bathroom, see the doctor, have visitors, and so on.
  • Time changes as, dependent on others for our treatment, we have to wait – for a procedure, for results, or to see the doctor. Having no personal agenda or the stimulus of our former lifestyle, we might have periods of boredom and the sense of time being interminable.
  • Making sense of being a patient and all that that entails is significant for some of us. Finding meaning can help us regain some sense of agency; it can also lessen the feeling of chaos and help us return to a sense of calmness and normality.

 

Physical Pain & Discomfort                                                          

With the progression of a serious illness, pain – if there will be any, how much, for how long, and what will be done to alleviate it – may well be a predominant issue. It can be helpful to understand the part we can – and do – play in how we experience pain and to familiarise ourselves with meditation methods and strategies to help us to minimize our perception of pain. See Pain section in Illness and Pain.

The above is a brief overview of some of the issues that may arise for both people who are seriously ill or in other ways incapacitated and also for those who are dying. These issues can also be more fully explored through the resources in our Illness and Pain and Death and Dying sections. 

 

Sources / Recommended Reading

 Close to the Bone: life-threatening illness as a soul journey Jean Shinoda Bolen, M.D. (Conari Press)

 Not the Last Goodbye: on life, death, healing and cancer David Servan-Schreiber (Viking)

Anticancer: a new way of life Dr. David Servan-Schreiber (Pub: Scribe)

Teach Us to Sit Still: a sceptic’s search for health and healing Tim Parks

Humour: The Lighter Path to Resilience and Health   Paul McGhee

My Stroke of Insight: a brain scientist’s personal journey Jill Bolte Taylor

 

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