"I didn't think she was strong" Blog #5

#ME #Chronicillness #Covid19 #Cancer #Chronicpain #Lockdown #Financialstrain #chemotherapy #sideeffects #warrior #strong

Blog 5

Dear friend, as you know, I was diagnosed with cancer on 5 January 2020. I was also (finally) diagnosed with “ME” in 2008. ME is a neurological, immunological and endocrinological illness. It is extremely debilitating and can be fatal. Www.mecfssa.org

“Chronic fatigue syndrome” is also used to describe “ME”, hence the use of the abbreviation ME/CFS in some countries... Unfortunately, it creates the impression the illness is about chronic fatigue and we all get tired right? We just have to push through it, right? We just have to get our heads right, right?

In the “ME” patient community we refer to ourselves as warriors, in the cancer world we often hear "she/he" is such a fighter....I elaborated about it in one of my previous writings “We are warriors”.

As said before being a warrior while having “ME” has the following meaning for me:

It means doing your best, continue living with pain, extreme exhaustion, brain fog, and so many other almost (often) unbearable symptoms. I think it is fair to say it also means STRENGTH.

In the case of cancer I think:

It generally means having chemotherapy and or radiation, undergoing surgery when needs be, knowing you will feel very ill, but you still go for the treatment. Trying your best to see the treatment as your best friend and not your enemy, i.e. embrace it.

As said before:

In my view, being a warrior (i.e. being STRONG) implies accepting your illness and still trying to see the beauty in the world, helping others where you can, when they have bad days and ALSO ask for help when you have a bad day or feel your body can't take anymore...Surround yourself with a support structure..

All of this is irrespective of the outcome of our illnesses........it is completely separate to it....

Ringing the bell

After my body reacted extremely well to the 6 chemotherapy sessions I had and I rang the bell at my oncology centre, I was overwhelmed with joy and shared the news with just about EVERYONE. Shortly after ringing the bell, a family member of my husband told him she never thought I was strong. She was extremely surprised at the way I handled cancer.

I was really upset.....Suddenly, it made sense to me why so many people said to me "just be positive, please don't be negative" when I was diagnosed with cancer.

It became clear to me that being a "ME" warrior had no meaning in their world.

Despite starting a Facebook support group in 2012...

Despite starting a Non Profit Organisation for "ME/CFS" in 2015. - THE ME CFS FOUNDATION SOUTH AFRICA

All these years I was perceived to be weak, to be negative, that it was believed that the problem was that I couldn't get my head right...

This is the one advantage cancer has over ME/CFS. and I say it with the greatest respect to my fellow cancer patients. Cancer is well-known, understood, seen as serious and healthy people have sympathy for it and grasp the challenges patients live with.

Over a hundred years ago Multiple Sclerosis was referred to as faker's disease. Today, it is a FACT that it is a serious physical illness.

Dear non-believer......

It takes a lot of strength to:

* live with a chronic illness without a cure while being viewed as weak, not being believed,

*with a very low recovery rate,

* let alone all the PHYSICAL symptoms - never ending exhaustion, pain, lack of stamina, moderate to severe neurological problems, the list goes on..

I (together with the "ME" community) can only hope that there will come a day when "ME" is recognised in the same way, that the stigma will be erased!

Love

Retha Viviers