By Tamas Mondovics
May 12th is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND) since 1992. The CIND illnesses include Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Gulf War Syndrome (GWS) and Multiple Chemical Sensitivity (MCS). The day is also the birthday of Florence Nightingale who was believed to have suffered from ME/CFS. According to awareness day organizers, every year multiple events are held to mark May 12th, either be held on the day or sometime during May.
Clarissa Shepherd, is one of those who wanted show support by sharing her thoughts when in part she wrote, “As we walk this journey of Fibromyalgia, Lyme, or ME/CFS – day after day – year after year – the trip can become enormous. What do we do to sustain or withstand it all? That’s the burning question, isn’t it?
As one who’s been to the darkness – been bed bound for years – lost family and friends – felt the loss of a career and a life once lived – all due to getting ill, the answer still eludes me. We can find our way to some type of acceptance while living with chronic illness, yet while in this place, feel stuck in an endless loop.
After all, we’re still human, so we still have wants, needs, and dreams. There are times we may feel that we no longer want to dream – we no longer want for anything, other than to be well. We may feel as if life has passed us by or has gone from our sight of vision. These are all typical emotions for anyone, who has been in this place for so long. It’s not about anxiety, panic, or depression. It’s about the length of time we’ve endured. It’s about being so worn of illness that we simply want to lay down and not get up. Not everyone could endure – not everyone could find new ways to invent themselves. We become creative in ways to accomplish what must get done, to survive. We see new talents; we didn’t realize we possessed. We become a type of magician in the way we learn how to accomplish things uniquely, unknown to most people. Those of us who’ve found this particular type of strength, due to illness, learn to rise another day again. It’s a strength, born out of years of adversity, disappointment, sorrow, loneliness, isolation, and struggle. It is an amazing example of your being – a mighty warrior. I’m not sure how we do this. It has to be a special type of strength that we possess – even in our weakness. Wherever it comes from, know it has made you who you are today. Letting out the grief isn’t a weakness. It too requires enormous courage.
So we walk hand in hand, learning as we go, walking a path less taken – given the choice we wouldn’t be on at all. Still, this is our life, and this is where we are – not who we are, at all. For we are mightier than we can comprehend within our minds – mightier than the darkness, which is a chronic illness – mightier than the hopelessness and despair that sometimes consumes us. In those times when doubt and fear grip you, know you’re fierce, unbroken, and a force of nature. When you feel as if you may crumble into a million pieces, take hold of the might and strength that surrounds you, hold you, binds you, and is truly who you are.”