The Qualities of the Carer
Caring for someone, who is suffering so intensely involves:
Caring and compassion are at the heart of being a responsive carer. Feeling sorry for the person can act as a barrier to true communication; compassion is about seeing the person and their circumstances and being in genuine relationship with that person. The important thing is to remember your equality of humanity. If you get into feeling sorry for someone ,you are in danger of rescuing or patronising them, based on your experience of and your feelings about pain, not theirs.
Compassion is relating to the person, rather than relating to your image of the person and how you feel about pain .Compassion is about having an open heart, from which flows kindness, love, authenticity, relationship.
What is required is empathy , not sympathy. Empathy is seeing the person within the context of their situation, not being overwhelmed by your own dismay and distress about the situation of the person. Empathy leads to flow of relationship and is essential if you are to be with somebody with Severe ME, anything that blocks the energy of the person or the interaction , can cause great distress and worsening of symptoms. It is really important to get it right.
Awareness is the key to good care. Awareness of your self helps you to better understand what your skills and knowledge are, where you can improve and what your strong points are and also what you are feeling and whether those feelings are getting in the way. You could , for example, feel overwhelmed by grief for the dreadful situation you find someone in. You might also find it hard to relate to the experience of the person because it is so atypical compared to what you may have previously known, so you may not understand what is happening; that is why it is so important to be aware, so you can respond safely and appropriately.
Awareness of the needs of the person , their symptoms and the things that will potentially help the person or aggravate their symptoms, are essential, to help you best assist them.
Part of respecting the person with Severe ME is to accept and believe that they are physically ill , with a neurological disease, that causes multi- system dysfunction and multiple symptoms.
The person with Severe ME needs what they need when they tell you, in the moment that they tell you. Their need may often be extreme and require an immediate response, in order to try and avoid symptoms deteriorating. Not only that, they need your help , but they may only be able to receive your help in the moment they are asking for it, because of the extreme hypersensitivity and variability of symptoms.
It really is essential to respond immediately, as waiting and delaying can have a disastrous impact on the symptoms of the person and cause immense distress, inadvertently. To the carer, living in the ordinary world, waiting a few minutes may seem like nothing, but can make all the difference in the world to the person with Severe ME. You have to constantly remember and be aware that the reality of the person with Severe ME is hyper - sensitised and their experience of the world is not the same as yours. You do have to try and enter their world as far as you can, in understanding and empathy.
To enable is to help someone with Severe ME to do something they need to do in a gentle, sensitive and caring way. It means that you make a positive difference to their life. To enable is to truly help someone.
With Severe ME, it may not be enough to want to help, it is knowing when to help and how to help and what does not help. There is a great need to be flexible, to be able to stop, if asked to and come when needed, to be willing to try again and to wait patiently and to try again patiently if the person cannot cope with the interaction in any one moment. In Severe ME, nothing is predictable or fixed in the sense that symptoms vary, fluctuate in intensity, energy may be better in one moment and not the next, noise sensitivity may be slightly easier and then massive, external environmental changes may suddenly impact and alter everything, so that the most important thing, in enabling someone, is to be constantly vigilant of all the things that can and might go wrong as well as all the ways to maximise the opportunity for the person to interact .
To be responsible is to be aware of your actions and reactions and to own them. When you help someone they are vulnerable. You need to take responsibility clearly for what you do and how you do it.
Responsibility is a complex issue because you need to be responsible and conscious of your actions without disempowering the sense of worth of the person and their equality. It is very important to respect the wishes of the person and focus on empowering them. Responsibility means not blaming the person if they cannot manage something and not blaming yourself, when things do not work in any one specific moment.
It is important to take responsibility for making sure you act with integrity and do nothing intentional to make the situation worse, but try to communicate with the person in whatever way is possible to ensure you are working with them, both taking responsibility for the relationship.
Be aware of all your good points. Feel good about yourself and remember why you want to care for the person. It is important to be aware of your strong points and where your skills lie. It may not always be easy, but your intention to help is important . Growing in self awareness will help you to develop a strong relationship.
© Greg Crowhurst