“Are you in pain now?” is a question I am often asked after revealing the infliction of my chronic migraine.
“What, even now?” comes the dumbfounded response when I nod my head and comment that my pain has been relentless for 12 years now. “But you’re laughing!” they add.
In writing this column about my experience with an invisible disability, I have been conscious about getting the tone right. The nature of hidden disabilities is such that much of the pain is out of view. With words, I have attempted to paint for you the quiet reality of living with an invisible disability.
What many people encounter when they meet me is an outgoing and vibrant young woman. Pain does not fit the image. Chronic pain even less so. The dichotomy of happiness and illness does not sit easily with many people. Yet, if you have been paying close attention to my previous articles you will notice that I am particularly interested in this theme of co-existence; that we can be both in pain and dancing, laughing and lonely, hurt and hopeful.
Therefore, when asked to focus today’s column on mental well-being, it is valid to acknowledge, that while my life is spent in acute pain, upset and emotional turmoil, it is also spent in happiness and is a life encased in love and friendship.
When at times I feel I have been dealt a bad hand in life in being burdened with a chronic illness, I equally feel that this world has granted me the best possible conditions to navigate this situation. I am blanketed by love and an ever-supportive network of family and friends who nourish my emotional health. This has been pivotal in sustaining my mental well-being.
Deteriorating health
Though I am not bullet-proof, I am fortunate that my mental health is more robust than my physical health. Many individuals with chronic illnesses encounter secondary mental illness as a result of their primary condition. This comes as no surprise to me. Due to a period of months of deteriorating health and my subsequent resignation from work, I have experienced penetrating isolation. Reluctant to label myself “lonely”, I have grown to know loneliness. Illness often carries loneliness in her store of ammunition. This comes despite endless visits, texts and cards from many wonderful people determined to ease the load. It also comes despite the fire in my belly to be among life.
Learning to adapt a life that befits my body and my soul has been a big part of my journey in managing my health, physically and mentally. Notwithstanding support from loved ones, designing a life that better furnished my needs was a task I was largely left alone with. Easier, perhaps, aged 27 as I am now, but less so at 15 when the patterns of, connection to, and confidence in our body are less established. Not having anyone take responsibility for my health or my care has served to feed into this feeling of loneliness; that I am alone with not only the burden of illness but with the responsibility for my own recovery.
Often it feels like the knocks are too hard and too frequent, not allowing me time to stand back up before hitting me to the ground once more
Illness is cruel. On body and mind. I frequently become overwhelmed both by physical pain and by the grief of all that I have lost through my ill-health. Often it feels like the knocks are too hard and too frequent, not allowing me time to stand back up before hitting me to the ground once more. If I have learned any one adaptive technique throughout the years to counteract the malevolence of sickness, it is being nice to myself. As someone with perfectionist tendencies this does not come naturally but is something I consciously work toward. Letting go of perfectionism has been liberating and comforting. To ask a body that cannot perform at 100 per cent to deliver 100 per cent of the time would be merciless, leading only to destruction. I attempt instead to practice kindness towards myself, in health and beyond.
Frustration
Of course, this does not follow that I am free from frustration or anger or hurt, but it is an effort not to turn these emotions inwards. Lightening this emotional burden of illness has been much helped by attending a therapist. Where initially I thought I had signed up to six sessions of talk therapy, more than two years later the well of hurt borne from pain and illness is still not bled.
To those who read my column and do not know me, I want to affirm that this is a life that knows great pain and also great happiness. And for those who know me, my life knows more pain than you probably see but the joy and the laughter is genuine. After all, if I don’t laugh when I’m in pain, when will I ever laugh?!