Living Life To The Fullest With Chronic Illness

Photo by Brooke Cagle on Unsplash

Recently, I was diagnosed with lupus, a systemic autoimmune disease. When the doctor confirmed the diagnosis, I was silently relieved. After enduring years of chronic pain, fatigue and skin issues triggered by high levels of stress, I felt like I’d finally gained an important piece of knowledge that would help me better understand what was happening to me.

Then, during my consultation, my doctor gave me advice, which was suprisingly wise. You might call it his secret recipe for living a full and happy life with chronic illness. In this story, I share with you two main ingredients of this recipe and notably, you can apply them even if you are well.

After explaining my diagnosis, the first recommendation my doctor gave was ‘Stay off the spices and go and live a regular life.’ A regular life? I thought, confused. I honestly didn’t understand what he meant. Then, I sat contemplating his words while reviewing my life in my head. All of a sudden, the penny dropped and I realised their significance. You see, I hadn’t had a ‘regular’ life. I had experienced many phases of high stress since childhood. These intense periods included caring for my mum, who was chronically ill, as a teenager and later trying to come to terms with her death while completing two intensive research degrees. During these times, I skipped over fun and rest. I didn’t date much or socialise often. I was so focused on achieving success and was convinced that everything I did had to somehow contribute to a larger goal or purpose. Don’t get me wrong, I have achieved so many amazing things and I am proud of them, but now, as I sat in my doctor’s office, he seemed to be giving me permission to stop pushing and just be me.

So, what does a normal life look like? I think this means different things to different people. To me, it means taking naps when tired, going to the movies, walking more often in nature, spending more time with my family, reading and creating more. In essence, I need more balance in my life and the key to achieving this is giving up my overperforming ways, which are primarily fuelled by my insecurities and lack of self-worth.

My doctor’s piece of advice also carries a second important implied message: don’t let illness define you. This is a hard one to put into practice, especially when you read about the possible long-term effects. I’m lucky though; at the moment, I’m relatively healthy and young. As I listened to him, I felt encouraged to cultivate and enjoy this wealth to the best of my ability.

As our session was winding up, the doctor looked at me through his glasses, and said in a thick accent, ‘Respect your body and your body will respect you.’ On a physical level, his message was clear; I needed to look after my body by resting more, managing stress better and eating well. Then, he added, ‘Avoid anything that doesn’t agree with you.’ At the moment, my list is quite long. Spices are gone, but so too are most grains, nightshades and dairy. While my diet looks odd and unappealing to most, my body is responding well. My skin is healing, I have less pain and my fatigue has eased. These sacrifices seem to be worth it.

Yet, my doctor’s words also resonated with me at a deeper level; respecting my body also meant listening to my instincts and honouring my limitations and boundaries. Gradually, I have become aware of how I have suppressed my instincts. Our bodies communicate with us in a range of ways, especially through physical sensations. We need to take the time to learn how to interpret them, especially since each of us is so unique. Failing to listen can be dangerous. Our instincts play important functions in our lives; they can alert us when our boundaries are threatened; and, protect us from danger.

I learnt to suppress my instinctual self during my childhood. As a empathetic and compassionate child, I wanted everyone around me to be happy and healthy and could see when someone was not. Yet, very often when I asked if they were OK, they claimed to be ‘fine’. This message was confusing and slowly I began to believe that my instincts were off. Meanwhile, I tried to please others and make them happy, often sacrificing my own emotional and physical needs. Of course, I failed. Over time, these tendencies and experiences created a long-term negative pattern; I believed I had to do everything myself and I struggled to ask for help when I needed it. Living this way is exhausting and isolating. My diagnosis has meant I have needed to face one profound and life-changing truth: I am human. I can’t fix everything in life. I can only fix things in my own small and significant world and perhaps, if I’m lucky, I may inspire others to do the same.

So, as I am learning, illness is a bearer of change. As I adjust to my new diet and work towards living ‘a more regular life’, I have strangely found a new level of peace. Why? I hear some of you ask. Well, for the first time, I am not seeking to fix this condition; instead, I am allowing it to teach me a new way of being. I wonder if this is the boon of my illness. When accepting pain and illness as teachers, they offer great lessons in resilence and courage, while reminding you that today is the best day to do the things that are truly important to you. Dance, sing and write that novel you have been putting off your years. Now is the moment — and if you don’t believe me, ask my doctor.

Lisa is an Australian researcher, educator and artist and holds a PhD in Archaeology.

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