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Why I've Recently Struggled to Write About Illness


I have been writing about illness and disability for some time, but recently, I have been finding it increasingly difficult to write about my conditions.

To begin with I was concerned because I want to be an author, and I was worried about this “missing the point” I seemed to be finding when I was trying to draft an article. But I have given it some thought, and I think I have worked out why illness is becoming a little harder for me to approach as a writing topic.

I am finally doing what I have been trying and hoping I would do for years. Despite the fact that just a couple of weeks ago I felt I never would, it appears to have happened almost over night. I am cutting the rope that hangs between myself and my illness.

I have been ill for over five years now with various different conditions, and over time, I have experienced terrible health anxiety. I have been afraid of my body and what it will do, and I have felt bogged down by the fact that I have been sick.

I have frequently sunk into a mentality that has had me defining myself by my illness, times when I haven’t been able to work out who I am beyond sickness. I have spent plenty of time talking the talk of not being defined by being sick, but not very much time being able to put one foot in front of the other and walk the walk.

I will continue to experience illness and disability. These things are not going away and I will live with them for years to come. The experiences, achievements, hardships, and downfalls I have had as a result of illness will stay with me. But something, in these past few days alone, has changed. It’s like something in me has finally had its time to grieve, wallow, and self pity, and now it has decided that it has had enough. It has decided to be free, and perhaps this is the step that I have needed to take in order to live the life I want to live.

I am sure that I will continue to have down days. I do not for a moment believe that every upset of illness will have left me forever.

I will continue to write about illness when something comes to me that I feel should be said, but this is light. A weight has at last been lifted off of my shoulders, and I had not realized quite how heavy it was until I stopped carrying it.

I am not my illness, and though I’ve been saying this for years, I believe that this week I am starting to believe it.

I do not want everything I do to boil back down to my being sick. I want to write fiction and create things that have nothing to do with my diagnoses. I want to talk to people and introduce myself by my name and accomplishments, not the jumbled acronyms that can only say what is “wrong” with me.

For five years, and a little more, I have sat in a box. The reflex sympathetic dystrophy box, the Ehlers-Danlos syndrome box, the anorexia box. My body is still in that box, swimming in whatever the goop inside is doing to it, but my head is poking out. It is seeing the world, and the world is not sickness and infirmary; the world is free, joyful and filled with hope.

I have no idea how I have done it, or why I have done it now, of all times – nor do I think the I’m completely done. But, to reference John Green’s “Looking For Alaska,” I think I may have finally been able to find the escape to the labyrinth, and I am excited by the future where I am not quite so consumed by the idea of suffering.

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