How A Disease Helped Shape My Life & Career (for the better)
Humbled by the fantastic contribution that other generous women have made as part of our Real Stories from Real Women series, I thought that it was time for me to be brave and share my story - after all, I'm a real woman too.
Let’s face it. Feeling sick sucks. No matter what you’re sick with – be it the flu, gastro, common cold, or some infection it all sucks. Being injured sucks too. Broken bones, wounds needing stitches, or strained and torn muscles – most of us (with the exception of a few masochists) don’t enjoy the feeling of pain.
The beauty of a discrete illness or injury is in knowing that you will feel like yourself again within a given time frame. A course of treatment, often including a period of rest and perhaps a few days off work is undertaken, and before long, you start to notice that despite feeling like death for a short time, you return to the land of living and resume your lifestyle.
But what if it weren’t that simple. What if you were faced with something that could not be time-framed, or be provided with a specific action plan for treatment? Or worse, if you were outright told that your lifestyle as you know it, including your work, needs to radically change for an undetermined period?
"I was blindsided and none of the advice seemed very helpful to me at that point"
This is actually a scenario that is not too uncommon. Whether it’s cancer, mental illness, chronic pain, or other health conditions – most of us know (or at least know of) someone who has been faced with a diagnosis and this proposition. It can be a very emotional, confusing and frightening time, full of ‘what if questions’ for the person facing it and general feelings of becoming easily overwhelmed for both them and their family. It can however also be a period of rapid personal growth and resilience testing (albeit thrust from necessity).
My personal experience of receiving a diagnosis of an autoimmune disease in my late 20’s was terrifying. Despite having worked for close to a decade as a rehabilitation consultant, and advising people on a daily basis about how to effectively manage illnesses and injuries to maintain their presence at work, I was blindsided and none of the advice seemed very helpful to me at that point. I was already feeling terribly ill, with a chronic headache and constantly aching joints in my arms and hands, as well as an overwhelming sense of fatigue that could barely be managed by up to 12 hours of sleep per night. I was open to regular infections that hit my lungs resulting in high levels of steroids which fluctuated my mood and weight, and my brain was constantly cloudy. I felt numb and nauseated with the pain killers that I was taking everyday, and was angry that my body was letting me down in such a mean way. For years I felt this way, and for some of those years I felt so angry that I didn’t even refer to my body as being ‘me’ any more. I felt like a hostage in skin.
Every aspect of my life was impacted. My social life dwindled, as I couldn’t maintain social events at night due to fatigue and pain. My love life suffered, as I wasn’t much fun to be around. My work suffered, as I was unable to keep up with the demands of full-time work and had problems with environmental factors such as cleaning products, toilet sprays, perfumes, soaps and even lighting arrangement that triggered constant flare-ups. My self-esteem and confidence hit bottom when my hair became lifeless and periodically fell out in patches. Overall, it was a really crappy time. And the worst part was, that nobody could give me any sort of timeframe as to when I would feel better, or if indeed I was ever going to feel like ‘my old self’ again. For a while there, it felt as though life focussed around blood tests, appointments, and medications. I felt alone and miserable.
"It made me a better consultant, taught me humility and forced me to learn how to “go with the flow”."
The harsh reality was though, that if I was going to reclaim any quality of life I was going to have to learn how to manage this condition and accept the changes that needed to be made in my life. Learning to identify necessary changes was relatively easy – I knew that I had to cut back on activities that raised my stress levels and increase other areas of my life that I felt more in control of, as well as sticking to a number of medically recommended strategies. But it was the process of accepting not only these changes, but also my changing sense of self that was a much harder task. I had to learn how to see myself again as a complete person, rather than ‘a person with a disease or condition’.
In no way am I trying sugar coat the experience, or suggest merely looking to the ‘positive side’ – frankly, sometimes it’s near-on impossible to see the silver-lining when you are coming to terms with a life-changing issue. The fact is, I’ve spent years grieving for the parts of my lifestyle that I’ve had to modify or give up, and I expect that for some aspects I’ll continue to grieve for many years to come. The things I miss most about my ‘before’ life are being in the sun – this includes so many of the activities that I used to enjoy like driving with the window down, walking near the water, sitting in the sun with a book, sitting in the sun with a drink, sitting in the sun PERIOD. I miss living without contingency plans – I’ve come to anticipate that I will have a flare-up every couple of months, and this now has to be taken into account when I plan holidays and work events. I miss how my body looked – I had always been a happily curvy girl, but my weight and shape has fluctuated since regularly taking steroids and other medications. Beyond the way my body looks, I grieve for how it feels – my sensation can at times be altered in my hands, feet and face, my muscles tear easily, and my skin can be extremely painful. Plus, it’s expensive to have a chronic condition!
Yet despite the emotional and physical challenges, I can openly credit my poxy auto immune system for helping to shape a me that I am becoming more and more comfortable with, and a career path that I love. Truth be told, I most likely wouldn’t be where I am today were it not for the disease. I wouldn’t have likely chosen the path of self-employment so young, and I may not have been as open to taking chances as I have been. Instead I probably would have remained in my very safe role of employee, and just kept working away until “something better came along”. Being forced to assess what I really wanted from life and work made me actually take stock of my values, goals, abilities and willingness to adapt. It made me a better consultant, taught me humility and forced me to learn how to “go with the flow”. And ultimately, it underpins my passion for helping empower other women to identify and achieve their goals.
So in at least some ways, I have to say… thank you poxy auto immune system. And if not in a direct compliment, thank you for making me see that there is actually a lot more to goal and career achievement beyond a disease.
*For information on lupus, head to www.lupusnsw.org.au - they're a great resource!