‘Find your tribe,’ they say. But how do you find your illness tribe—especially when your illness is rare? My particular brand of illness, known as lupus, apparently affects approximately 0.06% of the population and five million people worldwide.[i] So it’s not like I’m going to find many fellow ‘lupies’ at my workplace or local church. […]
lupus
Survival Skills: Get. A. Second. Opinion.
‘You have some blood markers for lupus,’ the professor said, ‘and you have some symptoms for lupus, but I don’t feel comfortable diagnosing you with lupus.’ I groaned internally. I was sitting in the specialist’s office, hoping to finally have some answers for the medical circus that lived in my body. I had been living […]
Survival Skills: Laugh
‘I don’t know how you cope with your chronic illness,’ remarked my doctor. ‘You seem to bear it so well.’ I laughed. ‘Maybe I should come in and show you what I’m like on a bad day!’ As good as my doctors are, laughter can be even better medicine. I have a pretty impressive repertoire […]
Am I Brave?
‘I don’t know how you cope with your illness,’ said my well-meaning friend. ‘You must be really brave!’ I flinched inwardly. I knew she meant it as a compliment, and I took it in the spirit in which it was given, but something in me reacted involuntarily. The notion of surviving chronic illness being reduced […]
How To Pray for Chronic Illness
I recently had a great experience of prayer. A group of friends came over and prayed for my illness. Guess what? They didn’t pray that I would be healed. They didn’t assume what I wanted. Instead, they listened while I articulated my prayer needs. Then, gently and sensitively, they prayed as the Holy Spirit led […]
Weird Childless Relief
After my recent surgery I experienced intense nausea and vomiting for a week. As the vomiting finally backed off, I remarked to a friend, ‘If morning sickness is anything like that, I’m glad I was never pregnant!’ I was slightly surprised at my own comment. Childlessness brings many unpleasant emotions with it: disappointment, anger, grief. […]
Why Diagnosis Was a Relief For Me—and When Getting Better is Hard
Being diagnosed with a lifelong condition is a source of grief for many people. But diagnosis was actually a relief for me—and my grief sometimes gets worse when I get better, not just when I get sicker. I am unfortunate enough to be living with an absolute monster of an autoimmune disease commonly known as […]
Stuck in the Middle
If you want a story with a happy ending—or indeed, any kind of ending—you’d better stop reading now. This story, like an unfinished symphony, is incomplete. I am still living this story; I do not know how it ends. All I know is I am currently stuck in the middle of a seemingly endless stretch […]
Radical Rest
We all dream of holidays. This photo was taken from a wonderful holiday of mine. We all fantasise about exotic escapes, island getaways, country retreats or just a quiet break at home. For those of us who holiday once a year, there is a distinct feeling of weary anticipation as the year nears its end. […]