#pwME #pvfs #poverty #awareness #chronicillness #loss #MillionsMissing #parenting #LongCovid #sad #mcas #severeME #mcs #fibromyalgia #chronicpain #chronicillnesswarrior
Dear Friends
Thank you so much for reading my blog.
I am reflecting on how ME has affected my life on so many levels, especially financially and to my horror my children... I know many fellow patients can relate and can only hope healthy people realise just how fortunate they are.
Being chronically ill is extremely difficult in itself:
- the constant dealing with discomfort, pain, keeping track of taking our medication, not being in control of our bodies
- missing out on so many events
- not knowing whether we will recover, etc.
However, living with ME and its co-morbid illnessses take all this to another level. I don’t think that people who don’t have ME or any of its co-morbidities and these days Long Covid as well, can even start to comprehend the price we pay.
It extends far beyond the physical elements as the emotional price we pay is also extremely high.
Feeling lonely due to being isolated, missing out on events hurts as we feel we fail our loved ones and friends. Financially it costs us dearly. The brain fog, feeling extremely unwell, experiencing “crashes” when we least expect it and so many other elements all contribute to us not being able to work anymore.
The “lucky” ones can do something from home or even bed, but a large group can’t generate any income at all. Then there are the costs of treatments, mostly symptomatic as there is no cure yet for ME and most of its co-morbidities.
Hence, not only are most of us not earning any income, we are also very expensive as we try different remedies to relief some of our symptoms hoping for some quality of life.
Quite a large number of patients fall ill while they are very young, resulting in them not able to have relationships, let alone families of their own.
I was very lucky as I was married and had two beautiful daughters when I experienced the gradual onset of my ME. They were ages 10 and 2. My ME impacted significantly in what I was able to do as a mother, however, on the other hand I was more around as I was so house bound.
Then our children grow up and one day you become aware of how your illness has really affected them, especially if you’re in financial despair as a result of being unable to earn an income. We all know how stigmatised ME was and still is to a large extent, although research has shown (and is still showing) that there is no doubt it is a multi-system PHYSICAL illness, with neurological, endocrine, immune, energy and many other serious issues.
On top of being really ill (for me it has been twenty years now) we are accused of and judged for many things, ranging from being lazy, thinking we’re ill, not trying hard enough, resting when we’ve crashed, etc.
However, the worst is when you start realising yo’re being judged for being poor. Nobody cares that it is due to having a debilitating illness, all they see is you’re not working, hence your lack of money is perceived to be entirely self-inflicted.
Many of us were fortunate to have studied and had good careers for some time, however, it came to an end when ME and its friends forced themselves into our lives.
In South Africa we don’t have government disability benefits for these illnesses, hence you are really on your own. Slowly, but surely savings are used up, then your family home is sold in order to survive another few years.
Years later all people see is the poverty, the small flat, the old cars and their conclusion is it has always been like that. Suddenly your place is no longer suited to entertain friends/family and the children can’t/don’t bring friends home anymore. The main reason being there is JUST NOT SPACE.
For the other reasons I know the arguments such as “if they really care for you they will come visit, material things don’t matter” and many more, but you know what it DOES matter. We live in a materialistic world, we are often taught to judge success based on where people live, the size of their property, the cars driven, etc.
So in the end we miss out AGAIN, this time not only because of being ill but of where we live. We don’t meet our children’s new friends and are definitely not part of the new lives they are building for themselves as young adults.
We are unknowingly being punished for being ill. In the end we lose our children to a large extent as well. The places we end up living are no longer HOME for our children and their children. No more family events, no more Christmas festivities, no more sleep overs, just nothing. It feels as if all their childhood memories have been erased, as if it never happened.
Looking at pictures of the past becomes painful, so much love was given and shared, who knew illness could steal so much.
Love
Retha