M.E. Awareness Week | To Tell The Truth.

Hello lovely readers, today is Interational M.E. Awareness Day. In commemoration, I would like to discuss a subject that is a critical part living life with Myalgic Encephalomyelitis; disbelief.


The Boy Who Cried Wolf. We all are familiar with the story. A mischievous shepherd boy that tricked the villagers into believing a wolf was attacking his flock and then, when the day came when a wolf really was attacking his flock, the villagers ignored the boy's cries as he and his flock were eaten. There are times in life when the truth is spoken but no one believes its authenticity. What if I tweaked the story? What if the shepherd boy only cried wolf when the actual beast appeared? What if, even without any reason, the villagers did not believe him? That is what it's like to live with Myalgic Encephalomyelitis.

"You're just being lazy."
Those were the parting words of many friends when I was diagnosed.

"M.E. is not a disability. We cannot see it."
The words of the Council when I tried to seek financial help.

"I wish I could go home when I'm tired." 
That was the first interaction with another student I had on enrollment day in September 2014.

"There is no such thing as M.E.."
That was the reaction I received from the first neurologist I saw when I began to have seizures.

They say life is a battle and its challenges are its warriors. Myalgic Encephalomyelitis is one of the biggest battles I have ever fought and still continue to fight today. But time and time again, I plummet into defeat when Disbelief surrounds me.

In the beginning, the world terrified me; so much so that I remained in the house for months. But the thing that terrified me about the world can be answered in one, simple statement; I would be judged. With Myalgic Encephalomyelitis comes crippling anxiety. With that in tow and the fact that most do not recognize M.E. as being real petrified me into seclusion.

I first had to deal with baffling doctors with my condition. It wasn’t logical in their eyes. I was tested for everything under the sun and when they tests came back normal, they were left scratching their heads. At the time I was too taken aback by being ill to understand how this impacted me but, in hindsight, it did play a part in the house-bound lifestyle that I would lead for months.

As I was being diagnosed, rumours flew around the village about my whereabouts. When no information had reached the ears of the villagers, the fabrication of stories began. When these outrageous stories about my disappearance reached my ears, it really did upset me. However, when the truth was finally revealed; things took a turn for the worse.

In those first few months post-diagnosis, I lost many people who were then very dear to me. Some were confused and wished not to involve themselves whilst others outright opposed my illness, calling it out as me “just being lazy” and that I because I looked, sounded, and acted fine in the prior months, that I was “fine.”

At the time, my strength had abandoned me and all of this pushed me deeper into the depths of darkness that M.E. had painted. I withdraw from everyone, everything, even myself and I turned into a recluse because I was scared. I was scared about what people would say.

When I took the steps into reintegrating into society, I was faced with this challenge every step of the way. It didn’t matter if people looked at me or not, their mere presence wreaked havoc on my mind and tortured me with the potential silent judgement they wielded in my direction.

When I had successfully returned to society, I began to experience the true extent of this worry as I was faced with constant disbelief – from medical professionals, authority, friends, and family both old and new – tried my restraint to not return to solitude. Some medical professionals, the one people we trust the most, failed me with their skepticism. That hurt greatly; to think that the one sector that have the answers refused to believe there was an answer – they didn’t believe the subject entirely.

This impacted on me and it turned me into a quiet person. Even today, I am quiet about my pain to all except those who I trust not to reject me. Sometimes it feels easier to not breathe a word – to avoid being confronted with scoffs of doubt of my credibility. I have fought many battles in my time and I know that I am not the only one who battles something. We all do. But should my disability be subjected to cruel taunts whilst others receive the help they need? Is that fair?

It is one of the greatest hurdles in life to battle it alone. But what I have learnt in the last four years is that I’m not alone. There are so many people who suffer the same pain I do and that fact gives me the strength to carry on fighting. I know now that we all stand side-by-side in this war and one day, we shall reign victorious and the world will see the day when Myalgic Encephalomyelitis will be recognized by all as a disability.



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Comments

  1. Very well written Tammy, I think you effectively and politely raise a lot of comments/challenges that M.E. patients face on a regular basis, particularly women.

    Happy May 12th friends,

    It is with great pleasure today that we announce the creation of "Advocating4ME", a multi-national group of grassroots activists working together to raise funds for the most promising scientific research studies for Myalgic encephalomyelitis anywhere across the world. If possible, I would encourage you to come over and check out what we have planned in the near future smile :)

    https://www.facebook.com/pages/Advocating4ME/1606524889591699

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  2. Great post Tammy and well said! I too sufferer from ME/CFS and am so proud of all the awareness that has been raised this week from fellow sufferers!

    Lennae xxx

    www.lennaesworld.com

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  3. I have nothing but respect and admiration for all that have to deal with this illness on a day to day basis but not just that but how you have learned to live with the worst illness and most tragic of them all, peoples ignorance into what you all deal with find it impossible to understand how friends have turned there backs when friendship is about support,respect and love. Very proud of you Tammy and all your fellow sufferers and stand by you in support of the fight you fight everyday. xx

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  4. This post is powerful! The fairytale twist is so creative-I have the sudden need to hug the boy who cried wolf now ☺️

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  5. Really great post. You write beautifully xx

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