By Smita Dutta.
While writing this I am again thinking, “Why me?” I do not know when I am going to stop thinking about his question, maybe I never will.
It all started 8 years ago after I gave birth to my son. I do not know what happened exactly that changed my body upside down and inside out. Nothing now works normally.
How badly it has affected my life. The saddest thing is there is no effective treatment for this condition, and this makes me cry almost every day.
We human beings are so advanced in other technical fields. We are visiting other planets, we have so many other developments that make us think that we are the most intelligent beings and that we know everything.
But sadly, people like me think we humans are nothing and we have achieved nothing in the field of medical science. I suffer every day, every moment, but there has been no medical treatment found for this condition, and there are many other conditions for which we do not have the answers.
I do not know when we will be able to find cure for conditions like M.E. (myalgic encephalomyelitis/encephalopathy). Will the scientists find the cure after I am dead? It sure feels like it.
But forget about a cure – the health professionals around us will barely even acknowledge the condition exists! They will not tell you clearly what the name of the condition is or provide effective treatments to help us live with it.
We will see lots of medical professionals in the course of our illness but will not get a helpful reply from any of them. In the UK we see GP’s first, and it is sad to say the GPs do not know anything about M.E. so I do not know how they can hope to care for us.
When even a doctor does not know how to handle patients like us then how do we expect any understanding from our family members? I have been suffering from this problem every day, but I don’t know what to do to remove all the pains, aches, and tiredness.
The only person who knows what is happening is me. Family members do not understand what it is and why I am behaving in a certain way. What they want to know is, “Why is she is not behaving normally? Why she is grumpy, rude, angry all the time?”
How can a normal person without M.E. feel the pain in my body, the aching pain that is always there, 24hrs a day, even while sleeping, even after getting up, all day, every day?
How is it possible to be happy if we have pain and aches and feel exhausted all the time? For me, the latest medical advances and technological developments are worthless. What is the use of modern medicine if people like us are suffering each moment without any help?
We will die feeling these same symptoms and even our own families will not be able to appreciate what we went through because the medical profession remains ignorant and fails to properly acknowledge this disease.
The only request I have of doctors and scientists now is to ask that they please, please, please, thoroughly research M.E. and find a cure. Otherwise we will exit this world and leave people behind who think only how bad, angry, and frustrated we were.
Please, government, let the GPs know about the management of M.E. through proper channels, rather than GPs seeing us like depressed middle-aged women who don’t have anything in their lives and who come every other day wanting something.
At least inform them that there is a condition called M.E. and let them explain to their patients as well as their patient's families about what happens with this condition, because people think we are lazy and being overly dramatic solely for attention.
What did I do that I have to suffer this for all my life? Was it my fault or my body’s fault or weakness that it couldn’t handle the ‘stress' in my post-natal period?
Why couldn’t I handle ‘stress'? I thought that it would be a temporary thing, and better times would follow and all I needed was patience, but I reacted so badly to it that it has left me in this condition forever.
Was it my family who should have more thoughtful? Could they have protected me from this lifelong painful condition?
I don’t suppose it really matters now whose fault it might have been. The fact is I am the one who is suffering with pain and weakness and my family – who might well have passed on this condition – don’t want to understand it. They don’t even remember my illness unless I am in bed and crying in pain.
The days I don’t cry indicates to them that I am fine and should be doing all the work like a normal person. Why is it so difficult for people around me to understand that the pain is always there? I cry when it’s intolerable and I get sad and depressed thinking about it.
If I get up and behave normally, it doesn’t mean that I am alright. It means I am trying to live without complaining. I expect other people to please remember about my condition and don’t expect me to behave like someone who isn’t ill – even when I don’t express what I am feeling.
 |  |  |
Visit the ME Awareness Media Toolkit and download posters and graphics.
The ME Association
Please support our vital work
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and ensure we are able to inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite or visit our JustGiving page for one-off donations or to establish a regular payment. You can even establish your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive ME Essential – quite simply the best M.E. magazine!
ME Association Registered Charity Number 801279