This past week has been harrowing, some difficult issues have been addressed and we have been thankful to all the agencies involved for their help and support. There is a long road ahead of us, but we can see a glimmer of light ahead – it may be far away but what is crucial is that it is there and we can see it for the first time in many, many months.
One very important lesson we have learnt and wish to share is that you should always follow your gut instinct and believe in yourself no matter what others may say.
We have been thinking about the peaks and troughs we experience living with chronic illness – the emotional turmoil and journey we are undergoing which has been likened to the stages of grief;
Denial and Isolation,
and finally Acceptance
The sufferer/s may go backwards and forwards through these stages until eventually acceptance of what has happened is reached which enables you to move forward from that and live within the confines and limitations of the illness.
I found an interesting article on-line which discussed this in a similar way – but the stages they had were specifically for the chronically ill;
and then Renewal.
Crisis – This is when you are in the acute stage of the illness and experiencing the terror and panic this brings with it. You are confused, angry, scared and may well withdraw into yourself as you try to make sense of what is happening to your body. You can’t think straight, are in pain and dealing with the many unpleasant symptoms that are ravaging your body. Family, friends, carers, who are close to you feel overwhelmed by what is happening and the changes that have occurred. It is an anxious time for all involved. You find it hard to know how to respond to well wishers sending get well soon messages, when there is no known end or resolution to the situation – when you have a chronic illness how are you supposed to reply? Carers are rarely adequately supported and can often become completely exhausted and full of self-doubt wondering if they are doing everything right – should they be doing more or doing it differently? At this time there is usually a flurry of doctors and therapist appointments, more so than later down the line – often an awful lot of conflicting information and treatments offered. It is a highly stressful and frightening time. Most of all for all parties involved is the fear of the unknown – what does the future hold?
Isolation – This is often when the reality of the chronic illness hits, that life will not be the same again. Hopes and dreams that were held before may not now be achievable. The knowledge that you will never be fully fit again and the thought of this can be devastating. Friends tend to drop away and give up on the ill person because it takes up too much of their time and energy to support this friendship. Sometimes the lack of contact could be because the friend doesn’t know what to say or how to deal with the situation – others may say “well you never make the effort to come and see me” as they don’t fully comprehend the limitations of the patient. Or that “you don’t look sick” and so don’t believe that they are ill but just pretending. You also may find it difficult to share how limited you are and not be able to reach out and ask for help – especially if you were very independent before. Feelings of guilt for being ill and not being able to do what you used to, having to have help and support may bring on feelings of negatively about yourself and not wanting to acknowledge the illness or talk about it and just withdraw into yourself.
Anger – This is occurs when, after suffering mental and physical pain, anxiety, fear, feelings of worthlessness, helplessness and thoughts that life is unfair and unjust to do this to you brings on a rage and anger at life, the illness and everything around you. The rage may be turned inwards and can lead to self harm (or even in severe cases suicide) – experiencing overwhelming feelings of despair that this has happened to you. The fact that there is no visible opponent to fight makes it so incredibly difficult to make any sense out of it all and that there is no cure or known treatment. The fear of relapses and worsening of symptoms, having to rely on others for help, not being in control of how your body behaves all lead to this anger and frustration. What makes it worse is that frequently feelings of blame can be reinforced by society – you look fine to me, you don’t look sick, why don’t you push yourself more and get some exercise, you’re just lazy…..Medical doctors are known to get angry at patients with chronic illness because they can’t do anything to make them better, sometimes the anger can be passed on to the family and carers, they are blamed for enabling the illness somehow. This is the most difficult stage to negotiate – both for you and your family and carers. The feelings of loss, lack of control and fear are just so strong. The only thing family and carers can do is to remain supportive and try – even though it takes tiny baby steps, to give you some control back over your own life. Set very small realistic goals such as – today I will sit up in bed and brush my own teeth. Focus on the your strengths and only set goals that can realistically be achieved – this helps you regain some small control over your life and help ease the anger.
Reconstruction – This stage occurs once you are out of the acute phase of the illness and into the more stable phase. Yes there will be relapses and ups and downs but nothing as severe as when in the acute phase. Feelings of having more control and stability help to make it possible to focus on new possibilities. After losing friends and even members of family during the previous stages this is a time when new contacts are made with people who are understanding and accepting of the illness. It takes pressure off you if you only people around you who don’t drain your energy by their demands – having people who are understanding if plans are cancelled last minute because of a flare up without any blame or guilt being placed upon you. The family/carers who have stuck around you adjust to the new regime and a new “normal” is established. This phase is all about discovering new hobbies and skills and finding emotional stability and peace. Learning to adjust life around the limitations of the illness and overcoming the anxiety and fear to discover a new found inner strength and feelings of self once again. To discover that you do not have to be defined by the illness, life is there to be lived – understandably it can’t be the way it used to be but a new path with promise and hope and the possibility of happiness.
Intermittent Depression – No one is invincible and there will be times when nostalgia is triggered and memories of what life used to be before the illness hit. This is normal, understandable and to be expected. It could also come in times of relapse when memories of the terrible acute phase come flooding back and the fear recovery back out of that phase will not happen. Grief of what life used to be and how life is now – hopes and dreams that are no longer achievable can hit hard. Counselling is often useful to help provide you with the tools to get through these times, so when it happens again in the future it isn’t so severe or frightening. This gives a sense of understanding of why these feelings come and a new resilience against them in the future. For family and carers – when this happens don’t ignore what the patient is going through or minimise the distress they are in, try and remain positive and so when they say if only I could do…like I used to, help them to re-focus on what they ARE able to do by saying…okay you can no longer do this BUT you ARE able to do this.. NEVER tell them to snap of it or pull themselves together! Depression is real and there is help to get you through it – don’t ever feel guilty if you suffer from this – it’s far more common than you think. Family and friends should always support the patient for getting through each day – not just when they have a relapse – life is difficult living with a chronic illness and every day a challenge – it helps to remember that.
Renewal – You never forget what might have been, what has been lost to you and those unanswered possibilities that the life before may have held for you. It’s a time of acceptance, if you use a wheelchair – so what, it helps you live the life you want to lead, don’t be ashamed about using it – be proud that you are accepting that it allows you to live life more fully with it, it doesn’t mean you have to like it – but you accept it. You move away from the fear and move towards acceptance and are willing to learn new skills, make new friends both well and those who are also chronically sick. Develop the new life that is now in front of you. If people are bothered by you and the way you are then move away from them, only have the people in your life who are supportive, accepting and loving towards you. You are not alone, there are others in the same situation as you – that’s why it may be beneficial to also get to know them too and you will feel less isolated and gain support, friendship and understanding from these contacts – a feeling of belonging to a group who “get” you.
The above is just my take on the article, it makes interesting reading so here is the link if you would like to read it for yourself;