Wednesday and a red sky sounded out the morning. By mid afternoon a stranger sat at my kitchen table sounding out my husband and me.
This stranger wasn’t Santa Claus on an early expedition. She was a local welfare officer and so like a previous meeting with such an officer, I scrambled to think of my many symptoms on the hop as I explained the only change to my condition was the fact I’d been pulled off GET (Graded Exercise Therapy) as it had made me worse.
I’m used to the microscope by now and only recently found myself explaining yet again to a family member the concept of good days and bad days and how my symptoms continually fluctuate. Then there was my explanation as to how easy it is to ditch the OCD tendencies I once displayed, detailing when you’re at the kitchen sink and there are ten dishes to wash and you’re struggling to wash seven of them it’s very easy to walk away from the remaining three.
Such conversations are frequent occurrences in my life, as are the microscopes and the judgments and the querying glances.
Now I know I could walk away from them, ignore them and pass no heed as to their tone and voice but I refuse to do so without utilising my voice. And so each time I’m met with a comment or stare, I fight. Providing examples as to what it’s like living in this body and what life altering changes ME has brought to me and to my husband.
It’s sad I have to vindicate myself and my illness so frequently and sad the knowledge and understanding towards ME – a chronic illness which has been around for decades – is still not present in today’s society. When was the last time a cancer patient or an MS or Parkinson’s patient had to justify themselves to the world?
I believe the only way understanding and recognition of ME will ever break through this barrier of ignorance is by using my voice and so I will continue to answer the questions and continue to explain what ME does within a home.
I owe such a fight to the severe ME patients bereft of their voice.