It’s not just the illness…

After ten years of fighting these illnesses and pain I realized something so astounding today that it left me speechless. I don’t really know why it didn’t occur to me sooner. Perhaps I am blindly naive at times. 

I realized that; 

It’s not the illnesses that have been the hardest battles, but everything else in life that can wear you down and break chronic fighters. 

By that I mean … as hard as these painful and debilitating illnesses can be, the worst parts for me have been,

1. The way others can treat you, label you, desert you, reject you, attack you and abandon you. Friends and family can disappear overnight and cause terrible emotional wounds that never heal. 

2. The way the medical profession seems completely unable to understand, cope and assist chronic illnesses. Some are even ambivalent to your suffering. It’s the last thing you expect from the caring profession. 

3. The way the world responds to you and dehumanizes you. 

4.  Medications are not as advanced as I had hoped or expected and the side effects can be devastating. 

5. Governments have no interest or compassion for those with long term illnesses or health issues. You are considered a burden and expendable. 

6.  You are invisible to society and not seen as courageous, brave, useful, wise, skilled, valued or important. 

7. Insurance companies treat loss and misfortune as opportunities. They have no care for people and their suffering. They make money from that suffering and you must fight long and hard for any financial assistance. 

8.  People’s expectations and demands on you. People expect a lot and give little. You are not valued like other human beings.  

You must contend with so much pain and disappointment from the outside world that it makes the illness itself pale by comparison. 

I have learned what it is like to writhe in pain all night and even be thrown into complete wretchedness, unending physical suffering and attack, but that is still nothing compared to the hurt and heartbreak that awaits you from almost every place outside these four walls. 

That has become the place where real pain, disappointment and devastation lies.

And I dearly wish it wasn’t so. Perhaps one day…

Gentle hugs, 


One thought on “It’s not just the illness…

  1. When I first saw an image of a person weighed down by lead blocks instead of their limbs ending in feet and hands, I thought it was perfect to describe the muscle symptoms of ME, as I experience them, at any rate.
    Just at the moment I think it visualises precisely the decades long, and much more debilitating, burden of bureaucracy and institutional bullying that I have carried (since 1988 when I first had one of my essential financial benefits withdrawn after 3 years because it was believed that we all recovered after 3 years).
    And now PIP….
    A benefit that is assessed by a UK government body which funded £5 million of medical” research in order to provide evidence that would enable it to deprive thousands of disabled people of their rightful entitlements.


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