By: Laura Bennett
For anyone living with chronic illness, pain, or witnessing someone experiencing it, the feeling of life being taken away from you – or it somehow being less than it’s meant to be – is profound.A Life with Lupus
Psychologist and author Steph Penny has lived with illness most of her life, eventually being diagnosed with lupus – an autoimmune condition where the body attacks its joints, tissues and organs, causing unpredictable and debilitating inflammation.
“It attacks anything in my body at any time,” Steph said.
“It’s completely random, [so] I can be fine one minute and then ‘call an ambulance’ in the next.
“There’s no real cure for [lupus] either, [and] treatment consists of: ‘if you get worse talk to your doctor’.”
Faith Through the Struggle
Having written previously about her experiences as a Christian woman in Surviving Singleness and Surviving Childlessness, Steph’s released Surviving Chronic Illness, a similarly humourous and frank account of her experiences living with lupus and the faith tracking alongside it.
“I’ve had some pretty strongly worded conversations with God,” Steph said.
“About what I perceive to be unfair, [and questioning] what kind of life this is.
“Some days grief knocks me off my feet and I feel the sorrow of [not being] the kind of person I wanted to be. I didn’t want my life dictated to by illness.”
Redefining Success
When you can’t predict how well your body will be on any given day, making plans with friends, working, attending church or simply planning to do the groceries can be a feat.
Accepting that you might make plans, only to have to cancel them last minute and “let down” friends or family can be hard, meaning Steph’s definition of ‘success’ or ‘being a success’ is constantly changing.
“I’ve got this idea of ‘should’, what I should be doing,” Steph said.
“Success varies wildly from day to day: some days it’s that I had a shower, other days waking up alive is success, and some days going to work and smashing it is success.”
Finding Purpose Beyond the Physical
What Steph’s realised over the years is that she needs an incredible amount of grace for herself, and values friends that offer it to her, appreciating that God’s purpose for our lives goes beyond our physical achievements.
“Sometimes our worth is not in what we can do,” Steph said. “Even if I can’t speak, even if I can’t serve again, even if I can’t work again – me being here still matters.
“There’s something about me being here that’s inherently worthwhile, and inherently loveable.”
Steph Penny’s book Surviving Chronic Illness is out now.
Article supplied with thanks to Hope Media.
Feature image: Photos supplied by Steph Penny and used with permission.
About the Author: Laura Bennett is a media professional, broadcaster and writer from Sydney, Australia.