Managing the Unmanageable

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Living with Chronic Illness - Using the Power of Mind

April, 2022

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Living with a chronic illness is a probability we all have to face up to at some stage in our lives. When illness arrives and makes its presence felt, we are made to face our vulnerability. From wellness to illness, it is a journey into managing the unmanageable; a testing experience in adapting to the unwanted intrusion of limitations. There are many different forms of chronic illness, from the purely physical to strictly mental illnesses, with conditions containing aspects of both, such as Parkinson’s with Lewy-body dementia. This article will focus solely on managing physical chronic illnesses as those with dementia with reduced mental capabilities may be unable to fully utilise these techniques.

 

I will explore what I consider to be the most prominent aspects of personality and behaviours that influence the management of illness, health and well-being. I draw on my experienceand observations as a former Social Worker. I have my own personal experience of chronic health conditions. I have lived with two chronic illnesses most of my adult life- Ankylosing Spondylitis (AS) from my late twenties and Parkinson’s disease, the early-onset form at forty. This year is my twenty fifth year of living with Parkinson’s. 

 

I pose two questions,

• why do some individuals manage their chronic illness more effectively and achieve a better level of functionality than others? 

and

• what are the determining factors that enable the individual to respond positively to the challenges of living with chronic illness?

 

Chronic illness impacts on your physical and mental health, and often results in a loss of vitality. There are also other losses- of opportunity, loss of expectations and loss of employment, income and living standards due to one’s deterioration in health. This list is not exhaustive; many may appear to be minor, yet they are still losses that diminish our functioning and quality of life. At first exposure to illness, it is not surprising to feel overwhelmed by the weight and scale of loss and the inevitable life that lies ahead.

 

How do we respond to the changes in health and our loss of wellness? When confronted with ill-health our first reaction maybe ‘why me?’ This is fertile ground for sowing the seeds of self-pity where one can easily adopt the role of being the victim of malignant fate. Another response is to deny there is a problem and try to ignore it, only to find that the problem does not go away. These are common reactions to illness and the losses it brings. Most likely we will make an appointment to see our GP. We look to the medical profession for the answers, for treatments, for help and understanding. It is natural to turn to the medical profession for their clinical expertise, diagnostic capabilities and access to a wide range of treatment options. Our relationship to the medical profession is generally a passive affair where the doctor has all the power and the patient has very little. 

 

However, it is possible to take an active role in the management of your chronic illness. Learn as much as you are able so you be an expert on your own illness. One does not have to be a victim nor fulfil the role of the passive patient. There are many people who in spite of their chronic health, are able to lead happy and fulfilling lives. In some cases, their illness has been the catalyst that has motivated them to achieve their goals. 

 

The writer Henry James, an astute observer of human behaviour, wrote-

 

‘One of the greatest discoveries of my generation is that a human being can alter the course of their life by altering their attitude of mind.’

 

James identified that it is possible for an individual to change their attitude or outlook. This was the key to unlock the power of the mind. He opened the door to one and all, offering the possibility of selective transformation. 

 

What exactly is meant by ‘attitude of mind’? Here we enter the realm of psychology to explain two concepts, mind and attitude. Mind encompasses all the non-physical aspects of our being- thinking, feeling, memory and motivation. Essentially all mental activity that makes one conscious of oneself, one’s experience and environment. This complexity of factors takes shape in the form of each individual’s personality. Attitudes are an expression of the personality, they are the conduit for our thinking, feeling and behaviour towards a person, object or situation such as chronic illness.

 

Altering your attitude of mind won’t make the illness go away but it can enable you to cope and manage the unmanageable (your illness) more effectively. 

This is the good news, for it offers light at the end of the dark tunnel of struggle. Having a chronic illness and maintaining a happy and fulfilling life is possible. 

 

What are the factors of mind and attitude that enable one to manage chronic illness? What strategies can we employ to improve our lives?

 

Acceptance

Acceptance of the condition is paramount. It is an ongoing process especially for chronic illnesses that are progressive and degenerative. One suffers the loss of small and sometimes larger aspects of one’s physical and mental abilities. This gradual eroding of one’s capabilities is marked by a steady set of minor bereavements. These losses need to be acknowledged whilst counterbalanced with an appreciation of the positive aspects. 

 

Accepting the reality of any illness is a difficult but necessary step. It may entail a period of dis-illusion; a shedding of one’s illusions before arriving at a point where a radical acceptance of reality replaces one’s projections. It means coming to terms with the fact that your condition will be your shadow partner for the rest of your life. Fighting or denying the reality of the problem takes an enormous amount of energy. 

 

The Chinese word for change contains two symbols representing contrasting emotional responses to change, fear and excitement (expressed as opportunity). When faced with chronic illness, we can approach it with fear and rigidity. After all, we are brought face to face with our fragility. Or we can read the body’s message, and whilst excitement may not be our reaction to this change of circumstances, it can present us with the opportunity to change our ways, acting as a valuable signpost to be taken notice of.

 

It is worth noting there are different issues involved when faced with a survivable degenerative condition and a non-survivable one. Confronted with the ultimate loss, that of one’s life, the question of how far one can manage the chronic illness necessitates a separate and qualitative set of priorities. It is possible, even in these truly dire circumstances to still find scope for some active management of oneself.

 

Perception

Your perception of health and illness plays a vital role in determining how well you respond to the challenges of chronic illness. The connection between mind and body cannot be overstated. Our mind’s response to physical illness will shape how we negotiate its progression and impact on our ability to function and manage it. In simple terms, if you perceive yourself as being ill, the body will inevitably follow. Your identification with your illness negates the opportunity to alter your attitude, leaving you to be either a victim or a passive patient.

 

During my pre-diagnosis period I asked myself, ‘am I ill and if so, where is my illness?’ My perception of myself was clear, l did not see myself as being ill. I experienced myself as a person with a healthy mind who has to manage an increasingly complex pair of chronic conditions. 

 

Balance

A healthy mind is a great asset. During my first years of living with un-diagnosed Parkinson’s, I was acutely aware that there was something very wrong, but what was this something? There was no doubt that there was a physical issue confronting me. My mind remained balanced and healthy. Over the years I have observed that when my inner equilibrium is disturbed, I manage my Parkinson’s symptoms less effectively. 

 

Depression

Depression is very common and it goes hand in hand with Parkinson’s and most other chronic conditions. No one knows your state of mind like yourself. I have learnt the importance of managing my mental health and recommend developing strategies for maintaining good mental health hygiene. In my late twenties I experienced a deep and dark period that lasted eighteen months. I was diagnosed as being clinically depressed. Once I had emerged from it, I sought to ensure I never returned to that space. The following strategies have worked for me. Monitor your moods and self-talk. If they stay low for more than 4 consecutive days, I would recommend early intervention. Get help. One can feel shame in seeking help, but it really is a positive response.

Talk to others, choose those you can confide in and you feel will listen without judgement or interruption. I write about my troubles and my feelings. This breaks into the mental chatter, articulates it and externalises it. Physical exercise stimulates the body and mind, I take my dog out for two long walks a day- this activity takes me out of my house and into nature. There is a lot to be said about pet ownership in terms of the health benefits for overcoming depression.

 

 

Monitoring self-talk

Our thoughts reveal a great deal about how we see ourself. Most of the time we are not conscious of the continuous stream of self-talk taking place in our heads. You can learn a lot by focusing in on these conversations, listen to the tone of voice, the words you use and the messages you send yourself. These are signposts to the psyche. Most people are not conscious of the power and influence of their self-talk and its influence on their self-image and self-esteem. Becoming aware of it gives you the opportunity to alter your script and transform your most essential relationship- the one you have with yourself.

 

Learn to listen to your body, trust your instinct: 

Your body is your home; take good care of it, it’s where you live. Get to know your own body. Learn to listen to it through becoming more aware of it. This will build trust in your instincts and sense of what works and what does not.

Mindfulness is a simple technique. You can still the mind by simply sitting and concentrating and focussing on your breath to achieve awareness. I also find this helpful when I am having an 'off' phase and am 'frozen' or dealing with pain. With regular practice, you can use this technique in many beneficial ways.

 

Movement and activity                                                                                            Be it physical or mental, stay active. It takes discipline and motivation to exercise regularly so that fits naturally into your daily routine. Being an active person will eventually become second nature - you are engaging with life and that will give you energy and drive.

 

Know when to fight

You will encounter many struggles on your journey; from accessing the right medical services, dealing with the State’s benefits agencies, to having to face discrimination because of your disabling illness. These factors all put additional stress on you and are capable of accentuating your feeling of being a victim.  I learnt early on that you cannot take on and fight every battle or injustice that befalls you. You will wear yourself out. You need to conserve your energy and resources for your well-being. Prejudice and discrimination exist, and can range from unsolicited derogatory comments by strangers passing in the street, to losing one’s job and income unfairly. I fight only the battles that I know I cannot afford to lose. 

 

Passions

Indulge your passions, they are a source of joy and they energise you. They are the sunshine that pierces through the clouds of daily struggles that can limit your vision. Some challenges are welcome and some are not. Finding my way through a difficult day or period of ill health, whilst not letting myself get depressed, is a challenge and one I take more pride in mastering than when I am well and walking my dog outdoors. Challenges have given me the opportunity to extend my boundaries. I draw strength from the sense of having achieved a goal. Focus on what you like and what you are able and capable of, and most importantly, what gives you pleasure and joy.  

 

Problem Solving

You will encounter many problems and difficulties in many areas of your life. This comes as part and parcel with your illness.  It is wise to accept that this is a reality that your condition will bring you. Developing a protocol to deal with problems ahead can be very beneficial to minimise the impact on your health and the stress that it will inevitably bring.

 

According to the Chinese writer, Den Ming Dao, problems can be seen to be a composite of three elements- puzzles, obstacles and entanglements. Each requires a different strategy to resolve it. A puzzle needs to be analysed carefully to unravel it. An obstacle needs to be overcome or manoeuvred around. An entanglement traps you in a maze of limitations, the only possibility is to extricate yourself as quickly as you can. 

 

Give yourself time to reflect on the problem, seek informed advice, many difficulties can seem overwhelming at first sight. I have found that I like to sleep on a problem, especially if it requires me to make an important decision. I need to absorb the facts and weigh the situation up thoroughly. I have greater clarity in the mornings when my thinking is more lucid, which is partly due to having less medication at the start of the day. Patience is most certainly a virtue when it comes to solving problems.

 

Conservation

Conservation is a concept of great importance in the management of chronic illness. As the years go by and your disease progresses, one’s health, energies and resources head in the opposite direction. Put simply, chronic illness eats away at all of your resources, physical, mental and emotional. Normal everyday tasks begin to take longer to do. This can be a gradual process that can go unnoticed at first. You cannot do what you did before which can be a source of enormous frustration. The situation calls for flexibility and patience to adapt to your altered circumstances. 

 

A positive response to this situation is to reassess your time scales, prioritise your activities, reduce the demands wherever possible and seek support. There will always be tomorrow to get the job done. Resist the temptation to overcompensate for your illness, especially if it costs you your health. I know from my own experience how difficult this can be. I struggled for over five years trying to keep on working in a highly demanding and stressful job. I was very committed to my vocation, but I was faced with the stark reality that my illness was rapidly advancing. Parkinson’s and high levels of stress are a toxic combination. I took early retirement on medical grounds. I focused on my needs and not those of my work and reaped the benefit of improved health.

Learn where your limits are. 

 

Self-care                                                                                                                    My illness initiated a new relationship that I have with myself- a relationship that has evolved and grown through living with Parkinson's, and with it, the responsibility of taking care of myself and managing my condition. Through this I have gained an emotional maturity. This is most evident when I go through the difficult periods that come with Parkinson's; the times when I have been confronted with my infirmity, my fragility, my vulnerability. 

My Parkinson's is a part of me. I talk about my relationship to it, but essentially it is my relationship with something that is part of me. Through this act of relationship, I have come to accept and nurture this aspect. I have no desire to embody something that is a source of anger, bitterness or hatred within me. My ability to take care of myself has transformed my way of thinking about illness. I have come to realise that one of the greatest strengths you can have reveals itself in the quality of care you give yourself when your illness renders you vulnerable. 

 

Qualities of the Personality

The personality is a complex structure made up of many elements- feelings, sensations and beliefs which are expressed through behaviour. The following list does not need deeper analysis as it speaks for itself: motivation, adaptability, improvisation and optimism.  Being positive comes more naturally to optimists, people who see their glass as half full. It manifests as resilience- the capacity to recover quickly from difficulty. 

 

Henry James saw that the potential power of the mind could be harnessed by altering your outlook. The key that enables the individual to take this step depends on their perceived need for change and the strength of their motivation. Their orientation to do so lies within the nature of the characteristics of their personality. The most important resources in the challenging and complex scenario that chronic illness presents are one’s individual personal attributes.

 

The mind is a treasure trove of power and influence, especially in the relationship to your body. For many people with chronic illness, this valuable resource remains dormant. The medical profession, trained technicians in the healing arts, rarely enquire about your state of mind. They tend to focus on the physical aspects of illness with a reliance on treatment administered to the passive patient. There is a place however for modern pharmacology in the management of chronic illness. Taking your pills can give you a platform to improve your health, but it is limited in its scope. When it is harnessed with the power of the mind, its influence on health and well-being is considerable, if not transformative. 

 

My response to Parkinson's can be summed up simply: I did not choose my illness, but I have chosen how I will live with it.