How do you help someone with Severe ME ?

Stonebird :
How do you help someone with Severe ME ?

Linda and Greg Crowhurst 13th Sept 2011

First and foremost you have to remember that the person with Severe  ME does not react to the environment in the same way that you, a person without ME, does.

The environment is hostile and assaulting, normal things that you would not even notice or would enjoy are too much, for the person with Severe ME :

Noise hurts.
Light hurts.
Movement hurts.
Food hurts.
Music hurts.
Chemicals hurt.
Cleaning products hurt.
Perfumes hurt.
Contact hurts.
Questions hurt.
Information hurts.
Movement hurts.
Relaxation hurts.
Rest hurts.
Exercise hurts.
Computer screens hurt.
TV hurts.
Talking hurts.
Radio hurts.
Interaction hurts.
Demands hurt.
External expectation hurts.
Clothes hurt.
Touch hurts.
Trying to help, hurts.

Everything you do can hurt and make that person hurt, can make the person more ill, can deteriorate their physical health.

However dreadful their life is, you have to remember you can make it worse without intention.

The best thing a person with Severe ME can hope for is that you :

Accept that the person is extremely physically ill.

Know that they will not react normally to any stimulus.

Know that they may not be able to communicate their needs and wishes at any one time, or at all.

Know that their reactions are because of illness, not necessarily how they feel about you.

Understand the affect you have on them, because they are physically ill and extremely hypersensitive, in multiple ways.

Minimise the impact you have by respecting what the person with Severe ME tells you and by relating it to your own actions i.e. if they say “Don’t wear perfume”, it is because of multiple chemical sensitivity. So please do not wear perfume.

Do not minimise the importance of what they tell you or think they are being difficult. Realise how significant things are.

Even if things seem bizarre and extreme to you, do what is asked of you out of respect. You can make a person dreadfully ill otherwise.

Understand what is physically wrong in the person;  in Severe ME there is  complex multiple system dysfunction. You need to be clear that ME is a World Health Organization Neurological Disease, not a “fatigue” state, it is not about just being “tired” and exercise will not make it better.

Do not buy them gifts that make you feel like you are a good person, but which are irrelevant or in denial of the person’s reality i.e. do not buy toiletries and perfumes, for a person with multiple chemical sensitivity. Do not buy sweets , pastries, cakes, for the person who has food allergies; unless you know it will not harm them.

Do not give them a writing set, if they cannot hold a pen.

Be aware of any sensitivities, allergies the person may have and really try to think what the person needs or likes, that wil not harm them.

Be aware of the way noise sensitivity impacts upon a person with Severe ME and do not do things that will exacerbate it. It may be worse at different times of day. Understand when is the best time to try and make contact, if that contact involves noise i.e. telephone.

Do not turn up unannounced if they have told you not to. Be flexible in your arrangements with the person with Severe ME. Do not blame them or think they do not  care,  if they cannot keep and an appointment.

Communicate with them in the way they can manage; overstimulation can lead to worsening symptoms.

Do not disregard the physical limits placed upon a person with Severe ME :


·        If they say they can only talk for a minute, do not go beyond that limit, no matter how frustrating that might be.


·        If they say “do not ask a direct question”, find another way to find the information you want, because the cognitive dysfunction is complex and very real. A question could shut the person’s head down completely.


·        If they say they can only cope with one person in the room, do not bring several people with you to visit.


·        Be open and flexible.


·        If they say they cannot physically do something, do not disbelieve them.

Do not assume that the medical world knows best. The current medical system is compromised by psychiatric untruth.

Any medical opinion needs to be based upon the biomedical truth that ME is a neurological disease.

Do not assume that because you want to help, that you can help.

Ask yourself what can you offer, how can you help, not hinder or make worse ? Any interaction needs to be based on respect, honour and acceptance.

You need to :

Respect the person
Honour the illness
Accept the physical reality

and combat all untruth.

You need to know that there are no straightforward paths to help a person with Severe ME, no matter how much you want there to be.

You need to know that most things will not help;  many may cause additional suffering. You need to know that even if you do all you can to help the person, they may still not be able to access and take advantage of what you offer.

The gap between their life and your life is vast and wide and maybe unbreachable.  Isolation may be the only way a person can cope with the torments of their illness and the assaults of the physical environment.

Help them to live their life in their way and aim not to hurt them by ignorance, neglect, rejection, denial, carelessness, condescension, unawareness or over-enthusiasm and good intentions .

Most damage is done to the person with Severe ME by others :

Not listening to them.
Not hearing them.
Not seeing them.
Not accepting them.
Not understanding them.
Not knowing them.
Not thinking .
Not respecting.
Not getting it right.
Not validating.
Not valuing.
Not empathizing

 by  :

ignoring them
denying them
abusing them
neglecting them
forgetting them
being careless
being arrogant
disrespecting
devaluing
persecuting
avoiding
disregarding
imposing your will
interpreting wrongly
by thinking that you know better.

If you aim to be aware, hopefully you will avoid these pitfalls.

You need to be very careful to make sure that you do not wrongly interpret the reality of the person with Severe ME and end up blaming them, either overtly or covertly, for the situation they are in.

Do not give up hope, do not abandon them, listen and wait and love them still realising that they are horrendously physically ill; there is a great physical  need for healing but the answers are not necessarily there, no matter how much you want them to be.




Comments

  1. TheresaSeptember 14, 2011 at 3:10 PM

    Yes. One way and another it is an impossibility of an illness isn't it.

    One friend made the analogy that it was like being on a raft on the sea. In a dead, dead calm, you can ( often don't ) but just may find a bearable stillness but the slightest suggestion of a ripple and you are all over the place.Haywire.

    A vile pestilence that's for sure. And that's just the psychiatrists! Love Theresa xx

    ReplyDelete
  2. TheresaSeptember 17, 2011 at 7:53 AM

    PS By the way - I'm not against psychiatry per se. It was a psychiatrist who confirmed that there was nothing wrong with my mind - having been referred to him by a neurologist.I'm talking many years ago now.

    It would be great to think that things have moved on decades later. I don't believe they have. Not yet anyway... But we live in hope. xx

    ReplyDelete

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