I`m sure you recognise all or most of these statements if you have M.E. or some other `invisible` illness.
It`s all in your head
It`s all in your head
You`re lazy
You`re not dying
Pull yourself together and get back to work
Get on with your life, like everyone else
You don`t look sick
We all get tired
You make too much of it
But you look so good
You need to exercise more
You`re just depressed
What do you expect me to do?
I`ve definitely heard all of these at some time or another from family, friends or doctors. Even after ten years of being ill I have recently heard these words yet again from my family. They are hurtful and upsetting. I want to tell them that I`m not lazy. I`m sick.
Here is an excellent video with more things that people with an invisible illness are likely to hear.
So why is it so hard to understand M.E.?
I suppose it`s hard to understand because it can be invisible, it`s so variable and it`s not always easy for others to see what`s wrong with us.
I think you can only truly understand when you have M.E. yourself.
I often feel that the only people that understand are those like me.
I knew nothing about it myself before I became ill. So maybe I expect too much of others...
Understanding
Why
is it
So
hard to
Explain?
Why
must I
Repeat
once
Again?
Why
can`t you
See
that I`m
In
pain?
Why
can`t you
See
what`s wrong
With
me?
Why
don`t you
Support
and
Help
me?
Why
can`t you
Understand
M.E.?
So what can we do to educate others and to help with their understanding?
Here are some of my ideas and suggestions to tell others
https://www.facebook.com/notes/me-matters/telling-others/323368387690211
My way of telling others is to write about living with M.E. through my poems.
I have put those poems into a book My A-Z of M.E. (Myalgic Encephalomyeltis)
I have sent copies of my book to my family. I think it is beginning to help them better understand my illness. I certainly hope so.
I`ve been writing poems for many years now and my aim is to increase awareness and understanding of life with M.E.
At the same time I am raising funds for the excellent charity Invest in ME
http://www.investinme.org/index.htm
My book of poems is a must for
- those who live with M.E.
- anyone who faces the challenges of chronic and invisible illness
- friends, family or anyone wanting to understanding M.E.
In paperback from Amazon UK.http://www.amazon.co.uk/.../dp/1492735116/ref=sr_1_6...
Kindle version on Amazon UKhttp://www.amazon.co.uk/.../dp/B00EYXX1NW/ref=sr_1_1...
In paperback and Kindle version on Amazon.comhttp://www.amazon.com/My-M-E-Myalgic-Encephalomyelitis-ebook/dp/B00EYXX1NW/ref=sr_1_1?s=books&ie=UTF8&qid=1383303632&sr=1-1&keywords=My+A-Z+of+M.E.+by+Ros+Lemarchand
I hope you too find ways of helping others understand. I hope my book helps make a difference.
A bientot
From the French Femme
xxx
Brilliant Ros,and thanks :) XxX
ReplyDeleteThank you xxx
Deletegreat stuff ros xx
ReplyDeleteThank you xxx
DeleteI agree Rosalynde, I feel that others will find this illness and its symptoms difficult to understand. I'm still learning after 11 years.
ReplyDeleteBut I do feel that with a greater understanding I have been able to alter my behaviours and life so I can still feel productive and happy whilst working within my non-insubstantial limitations. Your writing is certainly productive and creative.
It is good to see the positive suggestions, sites and help you are offering to others on your website. That is really good. No doubt others are sending you thankful messages back. Anything that can give us further understanding about how to deal with this dreadful illness is much appreciated.
Sometimes finding that silver lining is very difficult, especially if people don't understand what we are going through. I'll bet that may not be as easy to put into verse either? Quite a challenge I'll bet.
Thanks for what you are doing to raise money for research. We all owe you a debt of gratitude.
Thank you for your helpful, positive and supportive comment. I think we all have to do what we can to increase awareness and understanding xxx
Delete