ME/ CFS/ SEID/ PVS/ CFME Does a name matter?

Good job you only have Chronic Fatigue and not ME, that is really bad!
I bet you have had that said to you also?

It is often statements like this which force me to write rather than let the words bother me. It is not the person insulting me on purpose or trying to hurt me, it is simply a lack of understanding. I am thankful that others do not understand I would not wish Fibro and Chronic Fatigue upon anyone.  It is the fault of the medics for continuous name changing of medical conditions that is the fault. It is their lack of understanding that is the problem. They like illness that they can put into a box classify and cure.

So before you allow words of loved ones or people you meet make you want to pull your hair out for their lack of understanding, it is not their fault.

So what is in a name?

Myalgic Encephalopathy or M.E
Chronic Fatigue Syndrome or C.F.S
Systemic Exertion Intolerance Disease or S.E.I.D
Post Viral Fatigue Syndrome or P.V.F.S
Chronic Fatigue Immune Dysfunction Syndrome or C.F.I.D.S

To me personally, it does not matter. It will never change my suffering no matter what people call it. But to a lot of people it does matter, it matters a lot!

When you live your life with severe and debilitating fatigue, painful muscles and joints, disordered sleep, poor memory and concentration you want a name/label that personifies your suffering.  Many perceive the names that are given are not serious enough for a debilitating neurological illness. "It is the equivalent of saying someone with dementia has a chronic forgetful syndrome." (ME Association)

I firmly believe that there is no textbook definition of this condition that truly identifies with our daily living. Medical textbooks were written for the average person, we are all created as beautiful individuals, we put into our bodies different levels of nutrients, we live different lifestyles and have different other conditions. This is why I prefer a holistic approach to illness.

It would be wonderful if one day they came to a decision of what to call our illness. A name that everyone identified with and was happy it is a true definition. Until then it would be better to learn to put your energy into the things within your day that matter.

No matter what they call it society will always struggle to understand.

No matter what they call it the name has no impact on your level of discomfort and pain.

No matter what they call it a name change will not cure you.

If a hundred of us all lined up with ME/CFS/SEID/PVFS/CFIDS we would not be all the same, this is what confuses people so much about our condition.

This is why I don't get on with support groups. I have joined so many and struggle with people constantly comparing what medication, what other illness, what symptoms, what dosage of medication, who has been diagnosed longest, who diagnosed them, who uses crutches, who has a wheelchair, who gets PIP, who is the most ill, who is head of the hierarchy of being ill...Fu*k that!

ME/CFS/SEID/PVFS/CFIDS has taken away my interest in social debates and interaction, proving people wrong, giving up the need to be right.  I simply can not be bothered wasting energy as it absorbs my passion for life. I find more comfort talking to myself in a blog.

Wouldn't it be wonderful if the powers that be in the naming dept consulted all professional multidisciplinary teams working with people with ME/CFS/SEID/PVFS/CFIDS and consulted all the millions of people living daily with ME/CFS/SEID/PVFS/CFIDS and TOGETHER came up with a name.

Until that day I will simply continue to look after myself on good days and bad days, be happy I do have good days and use what energy I do have on what truly matters in my world.

My coping mechanism is to simply not care about a label and just love life each day whatever it brings.

 Love and gentle hugs to you all


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