SEVERE ME : THE UNEXPECTED LOSSES


When you suddenly collapse, disappear from your normal life and are labelled with a diagnosis of Myalgic Encephalomyelitis, aka "ME/CFS", you unexpectedly enter a no-mans land.

Nothing is as it was before. Everything is impacted upon, either subtly or wholesale.

An “ME/CFS” diagnosis is far too vague to accurately recognise or identify the underlying physiological disorder that underpins your devastating inability to think or move.

ME/CFS is a vague conglomerate term, that covers up a range of disparate illnesses that are viewed as fatigue conditions, rather than the WHO neurological disease that the name Myalgic Encephalomyelitis originally represented, when first coined and was associated with enterovirus.

Because the ME/CFS label you have been given is non-specific, without clearly identified physiological congruence and a safe, specified, appropriate biomedical treatment pathway, you may not be given the same medical respect of any other recognised physical disease.

Your losses have already begun to multiply.

The complex losses you are faced with, not only from the consequences of the devastating, disabling, life changing illness you are experiencing, but also more insidiously from the ambiguity of the medical profession towards it and their lack of knowledge of how to safely help you, means that fundamentally your person, your self-image, your integrity, your rights, your truth, can become fundamentally assaulted too.


You are thrown into a completely unfair, unjust, unsafe situation.

The provision that you might expect from falling ill in general, do not seem to apply to you once you have been given an “ME/CFS” diagnosis. 


You may feel, as a result, as if you have fallen off the edge of the world, but here, there is no safety net to catch you.


Anyone else, diagnosed with a long term, disabling or terminal disease, will most likely have some sort of medical support, general recognition, medical knowledge and understanding, a treatment pathway based on pathology or at least long term support and follow up, kindness and empathy for their situation, though we recognise that for rare diseases or particular circumstances, this may not always be the case.


Into the secret, hidden world of a person diagnosed with Severe ME, then, may come completely unimagined, unexpected, multi-level losses, that can hit you all at once and sadly never stop coming.

The full range of your symptoms is not even recognised, so can you ever get fair treatment or hope of a cure.

Misunderstanding, misinterpretation, mistreatment and misrepresentation is rife in ME world, negatively impacting your whole life potentially.


Here are some of the losses that you may experience


EXTERNAL LOSSES:


The loss of confidence in the medical establishment
The loss of respect for many professionals
The loss of security and trust in the systems meant to protect the vulnerable and disabled.
The loss of confidence in the diagnosis you have been given.
The loss of respect for many of the ‘experts in the field.’
The loss of expectation and hope to be seen, heard, validated, helped and accurately interpreted.
The loss of trust that you will be fully medically investigated by those in positions of power and responsibility.
The loss of belief in systems and people who fail you again and again.
The loss of provision of an accurate and reliable diagnosis and treatment protocol.
The loss of trust in politicians and charities who have said they speak for your disease, then misrepresented it.
The loss of trusting that doctors will do follow the spirit if the Hippocratic Oath and first and foremost,’ do no harm’.
A loss of trust in the integrity of ‘ME’ research.


ENVIRONMENTAL LOSSES:


A loss of being able to go where you want, when you want.
A loss of tolerance of every day things.
A loss of being able to block out sound.
A loss of being able to engage with other people, reliably, safely, repeatedly, predictably or at all.
A loss of tolerating speed, motion or movement near or past you.
A loss of mobility within your external and internal environment.
A loss of every normal thing that you had some to accept as the norm.
A loss of tolerance of perfumed products and people who wear or use them.
A loss of free, easy, simple interaction, whether in person, by phone, by writing etc.


PERSONAL LOSSES:


Loss of career.
Loss of family contact.
Loss of income.
Loss of health.
Loss of wellbeing.
Loss of independence.
A loss of ability to communicate.
Loss of tolerance.
Loss of ‘being yourself’.
Loss of feeling.
Loss of sensation.
Loss of security.
Loss of memory.
Loss of control.
Loss of proprioception.
Loss of movement.
Loss of energy.
Loss of muscle function.
Loss of creative ability.
Loss of friendships.
Loss of public celebrations.
Loss of figure.
Loss of self-image.
Loss of respect.
Loss of roles.
Loss of family contact.
Loss of enjoying ordinary every day things.
Loss of intimacy.
Loss of physical tolerance for contact.
Loss of vision.
Loss of speech.
Loss of good tolerance.
Loss of pleasure.
Loss of sensation.
Loss of comprehension.
Loss of understanding.
Loss of words and language.
Loss of expression.
Loss of presence in the world.
Loss of presence in your family.
Loss of connection with others.
Loss of social interaction.
Loss of faith.
Loss of hope.
Loss of action.
Loss of activity.
Loss of peace.
Loss of spontaneity.
Loss of dignity.
Loss of identity.
Loss of interaction
Loss of time
Loss of hopes and dreams


INTERNAL LOSSES:


A loss of connection between mind and body.
A loss of connection between thought and action.
A loss of connection between intent and actuality.
A loss of connection between hope and possibility.
A loss of connection between eye and hand.
A loss of connection between desire and ability.
A loss of connection between thought and mouth.
A loss of connection between action and memory.
A loss of connection between need for rest and being able to rest.
A lack of connection between reading words and comprehension.
A loss of connection between need and being able to get the need met.




Linda & Greg Crowhurst January 2020
Stonebird