For any relationship, there is inevitably, over time, a challenge to grow, to deal with change, to face adversity together.
When very severe chronic illness invades your world, however, it brings a profound encounter with your own limits, paradox and mystery, for you are daily confronted on multiple levels with loss and grief alongside a need to rise above it all and find your true self, still shining, even in the darkest chasms of pain.
The immense physical, emotional and spiritual stresses and strains of a situation where the other is long-term ill and disabled, brings encounter with loss, grief, anger, despair, a sense of hopelessness and helplessness.
This requires great attention, so that they do not weigh down or overload you or negatively affect your relationship.
It is so important to aim to keep stress for you both to a minimum, if possible. Stress complicates everything! This may mean fundamentally changing your life and the way you interact. It is not necessarily easy but it is essential to reflect upon, in order to get some balance and rest and see a way forward.
You must look after yourself well.
In the face of the seemingly overwhelming needs of the profoundly ill person, it is possible to overlook your own needs. It is also possible to not see or understand the other’s experience and recognise what they need and how to provide it. Both people are equally important, yet may have very different needs and ways of meeting them.
The task becomes, long-term, how to do this in a mutually loving and respectful way. This is inevitably difficult at times and the path may not always be simple, clear or easy to follow.
When difficulties occur, it is particularly important to take time, when possible, to be still, to reflect, to process what has happened, what you have learned, what you have experienced and felt. To look at what might be missing, to see things differently, to find a new way of doing things.
The challenge is to look beyond the situation and try to see new possibilities, anything that might help, that can be done differently or even learning to live with and accept things as they are.
Sometimes a personal journal helps for learning and reflection, an acknowledgment of disappointments, of hopes and of personal feelings, even those more difficult to speak about or express. I have kept a journal for many years.
Over that time, I have grown immeasurably as a man and learned better how to express myself and articulate issues and feelings, even though I may feel like I do not always get it right.
I have grown to accept that I am far from perfect, with a gathering tranquillity and sense of peace, liberation, joy even, but never complacency!
I have learned the importance of doing things that you really like to do, even if they need adapting for environmental reasons, in order to do them, such as playing music only with headphones on.
It is important to find things that you can enjoy and can bring happiness, fulfilment, fun, peace, uplift and renew you, without feeling guilty perhaps. For me that is gardening, cycling, web design, playing and writing music.
These all uplift me; yet I have had to develop careful ways of doing them in order to not negatively impact my wife, who is profoundly noise sensitive.
Entering into this journey with compassion for both of you and an intention to live as fully as possible within the context and limits placed upon you both, by the illness, is critical, in my experience.
It is not always easy, straightforward or easily achievable. I can only speak for myself, but I have known a balance between joy, in its simplest, purest form, alongside sorrow, in some very bleak places indeed. Often I have had to dig very deep, to find some chink of hope, in the darkest, most seemingly hopeless of times.
Yet, still, I have been privileged to know a depth of love, closeness and connection that touches an equally deep mystery. I am so grateful for that.
Be kind and generous to yourself. Aim to acknowledge what is brave, good, noble, amazing about you. That is so important. Learn how to be loving to yourself, if you have not learned it already.
Recognise all the good you do.
Try to maintain your own identity, never let it get totally swallowed up into the role of being a “carer” or the intensity of suffering. You have many aspects to yourself. Nurture them all, when you can.
Caring always starts with caring for yourself.
Only then are you in a strong position to be with someone so ill, so in need of your strength and presence, but don’t forget it is a two-way relationship and the other person still has much to offer with love themselves, despite the illness.
You can ultimately only do this together.
Greg and Linda Crowhurst January 2020
We affirm a person-centred partnership approach to caring. For much more on this, please see
Caring For ME, a Pocketbook Course for Carers.


Popular posts from this blog

Linda's response to the BMJ

The psychiatric abuse of Children with ME

We Remember: A poem for 8th August, Severe ME Understanding and Remembrance Day