The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
I ran down the garden, jumped on a bench, punched the air yesterday - I had just qualified, after a year's study, as a Life Coach !! Very exciting, although physically limited by caring for my wife, there is no end to the creative ways I can build upon this experience. Wonderful, life changing learning, so overjoyed I completed the course.
Response to BACME (British Association for ME/CFS) Working Group on Severe CFS/ME Shared Clinical Practice Document Version 1 When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine. Harm, even death for some, may follow poor treatment, care and ignorance. The frailty of someone with Severe/Very Severe ME cannot be exaggerated nor adequately described. You need to take the greatest of care. The problem with this BACME document is its underlying psychosocial values and attitudes. If you expect a person to get better, that will be your intention, that will be your goal, that is going to influence all your thoughts and actions in your caring role, especially if you set goals or limit care over time. The care provided by someone with a biomedical understanding of Severe ME is going to be funda-mentally different, however much the starting point of care might appear to be similar in this document, to the person who h
Pity Franz Kafka, who wrote to his love, in 1920 that “I’m mentally ill, the disease of the lungs is nothing but an overflowing of my mental disease.” (Sontag 1978) He actually had Tuberculosis. How awful it must be to have lived with the burden that you have been told that are severely sick because you think you are. (Sontag 1978) Pity Napoleon, Ulysses S. Grant, Robert A. Taft and Hubert Humphrey, whose cancer “was diagnosed as the reaction to political defeat and the curtailing of their ambitions. How awful it must be to be seen as a “cancer personality”; as a “loser”. These days, it is incomprehensible that TB and Cancer were once seen as a mental illness! But how can it be that the WHO classified, yet poorly understood physical disease, Myalgic Encephalomyelitis, a disease that places a greater physical burden on patients than schizophrenia, cancer, stroke, multiple sclerosis and Type I diabetes, (Johnson 2015) is widely regarded as mental illness by medicine, when there i
1. Severe ME is unlike anything else you have come across. Just about all you think you know will be turned on its head. Do not, for one moment, ever think you know better than the person. It is extremely unlikely you will even begin to grasp the depth and breadth of what the person is going through, they are so unimaginably profoundly ill and disabled, so you must, gently and always in partnership with the person, respond accordingly. 2. At all times, be aware that if you get it wrong, you may cause catastrophic harm. You can never, ever afford not to be aware of the potential impact of your presence, your movement, any perfumes on your clothes, the slightest noise you make, even your energy levels. You are going to need to learn, on multiple levels, the best ways to be with that person, so that you do not make an intolerable situation much worse. 3. Everything depends on how well you communicate with the person. You must learn how the person communicates and how YOU must communicat