We deserve better

This year’s ME awareness week, I’ve been discussing some encouraging reasons that it’s so important that we raise awareness. Today is my last thought for the week.

Reason 3: Because those suffering deserve better

I’ve looked in reason 1 and 2 at how people act on what they believe – and so the consequences of believing a lie mean acting as though that lie is true. The lies of ME include things like saying sufferers have ‘false illness beliefs’ or that they are fakers or lazy – and the consequences of those lies are evident to every sufferer.

They are things like mistreatment by medical professionals, ranging from not being taken seriously through to being locked in institutions and forced to undertake activities which are severely harmful. Outside of medicine, it can mean being shamed for having a disease, ostracised by a community and treated awfully. Families push people out for refusing to get better; spouses leave because they can’t cope and don’t have the support they need to care for someone who is suddenly severely ill; needed research grants are ignored; jobs unfairly fire people; gossip centres around someone who rarely leaves the house; benefits are cut off unjustly from those who are too ill for basic care – and it goes on.

People with ME do not deserve this treatment. Every sufferer deserves better. Every sufferer deserves rigorous scientific research to find a true treatment, a reliable cure. Every sufferer deserves doctors who have heard of their condition, specialists who truly understand it and real help to manage the disease’s course. Every sufferer deserves those around them to understand them and to come alongside them in their difficulties, not turn away.

I believe the route to this is awareness.

When doctors are truly aware of this illness, they will treat their patients in accordance with that awareness. When friends and family, carers and support providers are truly aware of this illness, they will move to support each other appropriately. When sufferers are truly aware of this illness, they will know how to take care of themselves and how to take charge of their own care where possible.

The lives of those affected by to this horrible disease are vastly improved by awareness, and that is what the sufferers, carers, friends and family deserve. They deserve a future where people truly understand this illness, where it is researched and treated seriously, where patients regain their dignity – they deserve a future with a cure.

My encouragement to every sufferer, carer, friend and family member this week is this: keep fighting, because every little increase in awareness that we make together moves us towards that future. I know so well that sometimes it feels like we are doing nothing. But each little action, each single person you inform and enlighten, moves us one step closer to the future of true understanding. Whether you have a popular public platform reaching thousands, an online-only presence telling your story, or a single conversation at the shops, you are helping spread that truth, and that truth slowly but surely makes a difference.

 

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