I would like to start by saying a big thank you to everyone who has left kind and encouraging comments, your support means so much to me. The last 48 hours have been exhausting and a real eye opener. I didn’t realise sharing my story about the realities of living with severe ME would stir up such a mix of emotions and reactions from everyone. The purpose of my post was to raise awareness and start a discussion about ME, so in that respect it was successful.
My local Newspaper (The Eastern Daily Press) published my story on website and Facebook yesterday and it caused an argument on their page. Comments saying ‘ME doesn’t exist’ and ‘we are all just lazy’ have been removed from the post. It’s upsetting in this day and age that people still deny ME exists, and just think we are lazy. I have all the motivation in the world but my body isn’t able. Myalgic Encephalomyelitis (ME) has been recognised as a neurological disease by the World Health Organisation (WHO) since 1969, so why do so many people, including medical professionals, refused to believe it exists? Are 17 million people just lazy?
It’s a stigma we, The ME community, face on a daily basis. Why do people have such strong views about an illness they haven’t experienced and have no knowledge of? Why do strangers feel they can judge me when they haven’t lived my life? Do you really think I would choose to live my life from my bed, to be excluded from everything I love?
Apart from the non believers I have been inundated by messages offering ‘miracle cures’ for my illness. It’s so upsetting to know there are people out there preying on the desperate and vulnerable. There is no cure for ME (yet). If what they are selling was a cure, everyone would be using it – it would be all over the news and no one would be sick anymore. Not only are they ripping people off, they are also giving them false hope.
I have also received many comments from well meaning individuals asking ‘have you tried this?’ or ‘My friend had ME and this cured her’ I know these comments come from people who want to help me and I’m thankful for your concern. When you live with an incurable and largely untreatable illness, you are desperate and will try most things. I will absorb your suggestions but please don’t force your views and opinions on others. Please don’t judge me if I choose not to take your path or try your suggestions. It’s exhausting, and if I tried everything suggested to me I would be broke and, probably, no better off health wise. Yes, I have tried many remedies, some have improved my health, like CBD oil, but most have made no impact. Sometimes acceptance (and no, that doesn’t mean I’m giving up) and rest are the best options, for now.
Lastly, to the people who have judged me based on one post – I hope you never have to experience life living with severe ME. I hope no one close to you is affected by this devastating illness, and I hope someday you choose to leave your prejudices aside and spend some time educating yourself about ME. My hope is that through education you will learn compassion and understanding. We, the ME community, don’t want you sympathy, we just want to be heard and believed. We have spent so many years ‘missing’, forgotten and dismissed, ridiculed and judged – It’s now our time in the spotlight, our time to be believed, our time to be heard, our time for fair treatment and our time for action. Thanks for reading. Take care x
If you would like to read the post that sparked all this interest, here is: My Story- the realities of living with severe ME.
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Fellow Severe PWME since 1991 and worsening.Having seen me with this vile disease my son says to say to those who don’t believe in ME(like it’s a religion!)to say to them that they don’t UNDERSTAND ME….none of this “believing”!Keep up your good blogs and stay as well as possible with Severe ME X