I REMEMBER READING articles on M.E. Awareness Day within the first year of being diagnosed with this debilitating illness.

It was a story about somebody who had this condition for five years. I couldn’t imagine what that would be like. It scared me, to be honest. I didn’t want to hear it. I didn’t want to know about it. I made a drawing: hands covering my ears so not to hear the reality of this very little-understood condition.

I became determined to beat this illness and be recovered within a year, maximum two.

That was 17 years ago.

I am still ill.
M.E. is a serious and potentially disabling chronic physical disorder, affecting up to 12,000 people in Ireland. Of that number, approximately 25% of those would be considered to be severely disabled, rendering them housebound and even bedbound and leaving the individual dependent upon carers for their everyday needs.

Many articles implied that there is ‘no future’, ‘no life’ with M.E.
M.E. has been formally classified by the World Health Organisation as a neurological disorder in the International Classification of Diseases (ICD) since 1969. However, as a clear diagnostic test is still not available, people living with this illness are still experiencing disbelief from society and the medical world.

Over the years, many articles implied that there is ‘no future’, ‘no life’ with M.E. I beg to differ on this view. I did find a life. Not the one I had mapped out for myself, but a good life.

I wake up. I am alive.

Creativity became my way to understand this illness, to see where the boundaries lay, to explore the possibilities beyond illness. My body gave me plenty of challenges. It still does.

After finding some level of recovery, from being housebound to being able to look after myself again, the past few years have seen deterioration again. It is a constant challenge to search and find new ways to work with my body, and to defy it at the same time. But I know we have to work as a team.

In a strange way the illness has granted me an exciting way to be creative. Being creative as, I see, it is not just about making art. Creativity is also to adapt your immediate environment to make it work for you. To make disability aids more fun. To create a garden, and be one with nature.

Being creative is my life.

How creativity has helped me in these challenges 

The drawings, collages, small sculptures I made during the first decade or more, were all based on the lifecycle of a bird. The egg – something vulnerable, but capable of becoming a new individual – became my motto. I ‘hatched’ and found my wings to fly.

The artworks were shown at several solo exhibitions and I published three books. I was flying. But not recovering physically.

About three years ago, I finally accepted that maybe I won’t recover. I thought that maybe I could put my precious energy into other things, like fulfilling a long-held dream to attend UCC.

My health was certainly not the best that year. But I did make it to college. One night a week. Disability Studies. A wonderful experience. Although my health was severely challenged throughout, I received a lot of support from various people and organisations, including UCC Disability Support and Irish M.E. Trust, to make this year happen. I am grateful to all.

The study opened my eyes beyond my own experience into the lives of many others living with disability and, to a lesser extent, chronic illness.

I became more grounded, in a way.

It was as if the birds – my companions – had dropped seeds of acceptance, which started to root and grow. The studies were the catalyst to my current creative project. An artist book-in-a-box, called Into the Light.

M.E. is an invisible illness in many ways – I want it to be seen

Again, a huge amount of support has come my way, in the form of grants, including The Rehab Group Visual and Performing Arts Fund. But also in practical ways and moral support. It is truly amazing to be the recipient of all this goodness. This might sound all too good to be true, but trust me. It is true.

Into the Light is a book about the experience of living with chronic illness. Seen through the eyes of nature and art, from personal experience and that of many others authors, ill or not.

The loose pages, with an image of art or nature and a short quote by another author on one side. The reverse has a short observation: day-to-day challenges, society’s views or comments, gratitude, stillness, fear, sadness, and wisdom gained.
My Book will be launched late summer, or early autumn. A Facebook page and crowd funding program has been sponsored by a friend, to help me see this project ‘into the light’.
M.E. is an invisible illness in many ways. Many people living with this condition are housebound. When we are out and about we can look quite well. But leaving our homes most likely results in having to recover for days or weeks afterward, away from society’s eyes.

I am not housebound at this point in time, but do spend the majority of my time at home. Yet, through my creativity, I have made contact with people all over the world.

Living in the darkness of illness, my creativity had brought me out into the light.

Corina Duyn is an author, blogger and artist with chronic illness. For more visit www.corinaduyn.com or  https://www.facebook.com/CorinaDuyn