According to Garner-
“When I was in the middle of debilitating long Covid, reading endless stories about the permanent damage to organs and that the illness may last for ever made me feel worse. Scary information has an impact on all patients, even those of us who are medically trained.”
Indeed information -scary or otherwise - can have a big impact on patients. It gives them the tools to best manage their condition.
When I was still working a significant proportion of my case load were people with neurodegenerative conditions and round about the time of diagnosis it was often a fight with family and with some medical staff to ensure the patient was adequately informed of the diagnosis. Often one reason given for this was that nothing could be done to treat the conditions so why upset the patient. Whereas the reverse was true, by not informing the patient often you were effectively excluding the patient from making use of what could be offered.
For example with MND (ALS) for the patient to make best use of available aids they needed to be installed before they were needed not after, but how do you effectively introduce an aid if the individual has no idea that they will need them. Environmental controls or computer based speech aids need to be set up and people need to learn how to use them, the patient should be in charge of deciding when to use them, but they only have that control if they have access to the equipment and know how to use it. People need to engage in a process of managing their condition from the start.
Similarly with swallowing issues you need warning of what can happen in advance to know when to thicken liquids, to know what food stuffs to avoid, when to liquidise solids and when to consider entral feeding. Not to plan ahead risks aspiration pneumonia and preventable early death.
This also applies to long Covid or ME. It may be harder for these conditions than say MND because they are much less predictable, but someone can only effectively manage their own activity levels if they understand concepts like PEM and orthostatic intolerance. This is as true for those who are lucky enough to improve as for those who do not. People also need to be able to include in their plans the possibility of not recovering or of subsequent remission.
Many years ago a friend fairly early on in her ME found she felt really well when on holiday on a Greek island. Right she thought, this is the solution, she sold up everything, cashed in her savings and resigned her job which enabled her to have a six month ‘holiday’. She felt wonderful and, after the 6 months, believed herself recovered. She returned to her home country to resume her life. She initially got temporary work, but after two weeks relapsed, with the cycle of PEM and crashes kicking in. She was never able to undertake paid work again. She was financially in a considerably worse position than before. Because she had resigned her permanent job she had lost all her work related sickness benefits and any pension rights. A six month investment in her health left her financially disadvantaged for the next forty years.
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