Anyone with very severe ME is extremely physically frail and has profound physical multisystem dysfunction. They can so easily be made more ill by the slightest thing.
Anyone getting involved with someone with Severe ME needs to take extreme care and have incredible awareness of the impact of any contact they have, especially if that contact is in a medical or caring capacity.
There are some key rules to entering into someone’s life.
· Be genuine.
· Be respectful.
· Be equal.
· Listen carefully.
· Understand as much as possible of the nature of that person’s illness and disability , how it affects them and how you affect them.
· Avoid arguing with them. Argument is exhausting and damaging for the person's health and well being.
· Accept you do not know best, but need to learn about that person’s reality.
· Realise how vulnerable they are to other people’s energy and attitudes and assumptions.
· Be very careful what language you use: language is particularly pertinent in the life of a person with Severe ME who has had so much incorrect information spread about them , particularly medically ,socially and politically.
· Be wary of misinterpreting their experience.
· Make sure that you are being genuinely person centred. Ensure you are congruent in this. It is very easy to say you are , yet still try to impose your will, your view, your expectation upon them, subtly or otherwise.
Never impose your will: you need to understand that the person with very Severe ME cannot comply with your will, they cannot even comply with their own. Their bodies simply are beyond that level of control.
- You have to fundamentally accept your need to fit in with their extremely limited abilities, not expect them to fit in with you.
- You must be willing to be infinitely flexible accepting and understanding.
- You need to develop genuine empathy.
- Check yourself and ask yourself whether you are aware of what this person is experiencing physically, mentally, emotionally and cognitively. You need to be relating to them within the context of this awareness or you may easily misinterpret their words or actions or responses or harm them unintentionally causing distress and deterioration.
Anyone coming into the person’s life needs to ensure they will not make false judgements or interpret the person's experience in a generalised way, based perhaps on unaware literature or misinformation or simply wrong opinion or lack of knowledge.
· Remember that what you can see is not the whole picture : the person is not experiencing the environment nor your interaction in the same way that you are though you can easily forget this.
· You need to understand the complexity of symptoms and how they impact the person. Believe them and accept this , then relate your interactions within the context of this knowledge.
· Do not patronise the person. It is easily done and not easily undone.
· In order to do no harm you must be able to empathise and reflect on the person’s reality. If you do not then you cannot advocate safely for them.
· Never assume that another person actually knows what very Severe ME is. Always check out their understanding if they are going to have power or involvement in the person's life. Great harm can be done by wrong assumptions especially thinking that if someone has a kind face or an easy personality that they will be coming from the right value and attitude and have the proper biomedical knowledge about ME.
· Be very wary of anyone using the wrong language about the person such as using the term CFS or CFS /ME , quoting NICE guidance, talking about chronic fatigue or improvement expectations.
Be very careful not to give the person’ s power away for them , by bringing in people who sound like they know what they are talking about. Make sure you know :
· what definition of ME they use
· what criteria they follow
· what practices they engage in
· what protocols they might suggest.
Make sure you do not inadvertently let seemingly nice people wrongly assess the person, make dangerous recommendations for the person’s health, and end up with inadequate or dangerous treatment plans.
Remember always how anything can make a person with very Severe ME worse and truly aim to do no harm especially through ignorance or relaxing your guard.
Trust no one initially; trust must be us earned and clearly deserved.