I wrote an article about the loss of my mom a few years back. I didn’t tell anyone I was writing it. It’s a subject I hold relatively private. The day it was published, I was rattled by a comment my ever-supportive dad made. He mentioned he had checked with each of my siblings that they were comfortable with its publication. I had never considered this. I had written about my experience. This was my story.
But a story is rarely ever just your story. Circular existences form mass Venn diagrams. Bíonn dhá insint ar gach scéal. My mother’s death is not my story. Many share in this story though we may tell it differently.
I struggle to separate my own self from my illness. Where do I end and my illness begin?
I was reminded of this recently when a loved-one became ill. I felt again, the weight of illness – this time not my own. It was a physical weight, a tangible load. Others did too. In many ways, the load was shared, and in others, we each carried a load of our own. Lives were put on hold and the big questions came to the fore as futures became unclear. The stories we had once written for ourselves would require an edit.
I mention this because my loved-one’s illness is part of my story; it is not just their story. Just as my illness is not only mine. The burden of illness is carried by many, not only by those who experience it first-hand. Though this thread of the story often remains unrecognised, invisible.
As a “patient”, someone who has experienced chronic migraine for 13 years, it can be difficult to accept that my illness burdens others, that they feel weighted and loaded because of me. And perhaps herein lies the crux of the matter; separating the ill from the illness. This is more difficult to do than you may think, I struggle to separate my own self from my illness. Where do I end and my illness begin?
Illness affects our behaviour, mood, outlook – think about the last time you had a head cold. When symptoms are invisible, as for those with hidden disabilities, negative behaviours are put down to moodiness or tetchiness, when the cause of the suffering cannot be seen. Many schools of thought argue that to separate the body, including its malfunctions, from the soul, is not useful. In fact, a common complaint in western medicine is that the person at the centre of the care is left out; dissected into organs and systems. Humans are complex, after all. Perhaps what is more useful is to distinguish our anger and frustration from the object of the illness and subject of the illness.
This is also important for those who suffer, many of whom, myself included, feel guilt for negatively impacting family dynamics, for straining relationships and being a sinkhole of fun in living situations. Burden is the buzzword that rings over and over in the head like a trapped mosquito.
This is not to say that the sick, like all humans, should not, at times, be challenged. Many of us have developed coping strategies, or behaviours that are challenging. I have many. For years, I wished to keep my illness to myself, to not let it burden others – to become their story too – so that I would retreat during bad episodes. I wouldn’t allow anyone in. This, I thought, meant they couldn’t feel the pain too. In fact, it meant they just couldn’t help make it easier.
Many have felt pain as a result of my pain. A silent sadness hangs in absences at Christmas dinners, weddings, birthdays, family gatherings and a feeling of hopelessness fills the atmosphere at my limp resignation to yet another migraine. Others feel sad when they watch me suffer, they feel tired when they are called upon to soothe me, run errands, or are left walking on eggshells on my bad days. They too get fed up.
I wish I could contain the pain. I wish no one else could feel the burden of my illness. But illness is part of my life, as it is part of many other people’s lives. And I cannot share my life, without sharing my illness and there are many people with whom I would like to share my life. And many lives affected by illness that I would like to share in.
When I was in primary school, I used to play a game with friends. One by one, we wrote a line of a story on a piece of paper, folded it down, passed it the next person where they continued with the next line until the page was full. The results were wonderful, superseding anything we could have written alone.
Stories, we agreed, were best when lots of us contributed.
Read: I'm loath to entertain the idea I've lived a lesser life than others