Partnership , an extract from our forthcoming book : How to care for Someone with Severe ME

Partnership

You need to try and work as best you can with the person. This means learning to understand what they need, when they need it and how they need it : it  may not always be obvious.


When helping someone with severe ME you need to be :

• prepared
• calm
• centered
• focused on what you are doing and the person’s reaction
• open to change, to stop, be more gentle, willing to try something else, or to wait for a better moment.

Because of the nature of the illness and their experience of the world , people with Severe ME inevitably become  more and more withdrawn from  normal life; ordinary things and ordinary people hurt, torment  them, mentally, physically, emotionally; whether intentionally or unintentionally.

The person with ME has a daily mountain to climb, as they try to understand the damaging impact, upon them, of the environment and the people in it . It is very easy to end up not liking anyone , not being able to tolerate anyone because of the impact they have upon you. It takes wisdom and awareness to understand what is caused by the illness and what is caused by other people's ignorance and sometimes deliberate selfishness.

Many people give up staying in touch with the person with Severe ME and ignore their reality because it is too painful for them to think about or too inconvenient to accommodate. People struggle with inadequate levels of physical care and support because engaging with others  is just too physically difficult; the carer may be the only person who interacts with the person .

To minimise the hurt, it is good to try and work out , if at all possible,  the underlying motivation  behind the apparent carelessness of other people.

There is colossal neglect , such  a lack of understanding of the complexities of engaging  with and aiding  people with Severe ME .To help is not simple,   but that does not mean it should not be provided.  Helping someone with Severe ME   requires endless  understanding , reaching out and awareness;  many people simply do bother.  In their ignorance, they choose to misinterpret the person with ME, to mislabel them as being difficult, as having a mental health issue, or just not being caring enough.

Sadly it is often  left to individuals to survive as best they can and to fight for everything they need. If they have a carer in their life that person may well  become engaged   in the exhausting battle for proper financial and physical services and healthcare. They may even have to advocate on behalf of the person.

In these circumstances the carer needs to be exceptionally well informed, aware and  focused upon  the needs of the person. The needs of people with Severe ME  do not easily fit into normal assessment systems or rigid systems and structures . It is not always comfortable as a carer to keep pushing for the rights and needs of the person you care for.

 It  may require you to be bolder than you feel in speaking out.

It is always important to remember that you are in partnership with the person , that you stand with them , for them and that together you can make a monumental  difference to that person's quality of life , health and their experience of the world. Despite any negative messages that you are powerless and without value, you can empower and value .

To work together to build up trust and respect and a partnership  that works for you both, you need to be person-centred in all your interactions and aware of the  impact of  the person's symptoms , so that you will better understand their reaction to you.

(Greg Crowhurst : From our forthcoming book : How to Care for Someone with Severe ME)