My name is Isabella and I have Systemic Lupus Erythematosus (SLE). I was diagnosed in April 2022, after suffering with various symptoms and not knowing why.
It was raining the day I found out the ANA test was a positive result; I was in the car with my now ‘husband’ (it happened this year, so I still get excited when I have an opportunity to introduce him as this!) and I remember instant uncontrollably weeping. I have always felt emotions very deeply, some may say I am a tad sensitive, I argue that I wear my heart on my sleeve! However, I had this reaction as I knew exactly what lupus was and was well aware of it since being a child.
My mother (A.K.A the real-life wonder woman) was diagnosed with SLE, among many other medical conditions when I was eleven years old. We were living in Ireland at the time, and from that moment our lives completely changed.
Confused by the term ‘lupus’ and unable to fathom the changes I saw in my mother, it led me to read a book called, ‘Talking about Lupus: What to Do and How to Cope’, by Triona Holden and Graham Hughes. My mother had been reading the book herself, but when she was resting or sleeping, I found myself yearning to understand what was going on around me and drawn to the bright yellow cover and delicate looking butterfly. This book cover would be the first juxtaposition to note with regards to lupus, as the vibrant colours and dainty butterfly certainly does not reflect how it feels to suffer with lupus for the rest of your life.
Ironically, last year once I had been diagnosed myself, my mother lent me this book again which I have re-read and absolutely recommend to anyone who has just been diagnosed. Life works in mysterious ways!
Since being diagnosed, and still two years later, my biggest hurdle has been acceptance. The grief of losing my previous life and my previous body felt too heavy to carry and the cycle began. I would have time periods of pure anger and rage that I could not do what I previously could, that I had been diagnosed with this disease and that I could do nothing about it. I would have time periods of deep sadness; feeling as though I would not be understood and that I was ‘not normal’. I was jealous of my old self—the one who could be active at the gym, or go out with friends filled with energy, the diligent worker who would turn up to work ready for the day, the energetic partner who could go for long walks and romantic date nights… the list goes on. The most destructive of them all I feel is the complete denial. I would (and still do) go through time periods where I pretend that I do not have lupus and I still can live the way I used to. I push my body to limits and I take no care to the body that suffers with every choice I make. I do not recommend this and I am making progress, however small those steps may be! These dark moments are reality and they are part of the grieving process, one in which is very real when diagnosed with a life-changing and life-lasting disease that impacts almost every part of your body. However important it is to go through these dark moments, the last two years since being diagnosed have not only been this experience.
Life’s juxtapositions are a matter of perspective and how you view the moments that occur as each day passes. Yes, I will not sugar coat the life of a lupus patient, however, life whilst having lupus has also been incredibly beautiful. It has opened my eyes, and changed me in countless positive ways.
Life before lupus was fast, tiring and draining. When suffering with lupus, you have a certain amount of ‘spoons’ (*high fives spoonies around the world*) and you must choose what you use those spoons on wisely. Your energy is sacred and the people and the things you spend it on are sacred also. People in my life who do not understand me, or do not reciprocate my energy simply cannot be given the number of spoons that I may have given them in the past. I will not say that I have ceased my days of people pleasing—again, this is part of the process, we will get there step by step! It has been made clear to me who is worth the time and energy that you seldom have with lupus and has made me begin to realise that those very people are the ones who deserve this energy regardless. Having lupus is a fast-track lane to cutting out this negativity, changing previous perspectives and realising what is truly important in your life.
Following on from this, is the juxtaposition of working and a career. My view of a career before lupus was extremely linear. I had gone to university and received my degree, finished university and gained a job which led to working my way up the career ladder within this. Anything outside of this view was almost alien to me and being diagnosed with lupus completely transformed this view, which I am truly grateful for. People would often tell me not to work so hard and I would believe this to be a good piece of advice, but had no idea how to ‘not work so hard’. Work was an escape, a deviation from thoughts and alone time with myself— it was a distraction and the more work I had to do, the less time I had to think about reality.
Just before being diagnosed with lupus, I was encouraged to interview for a role as a phase leader within the primary school I was working at. At this specific time, I was suffering physically already, but being the stubborn Isabella that I was, I applied for the job nevertheless. After being notified that I had an imminent interview approaching, my physical state resulted in a cyst rupturing and bleeding through just days before the interview. Still pushing myself to every limit, I completed it and received the job role position. Looking back on this now, I know it was beginning of the end for me—the end of my strict and stubborn views of work and the start of a completely eye-opening view of life. I am currently unemployed after quitting my job this summer to focus on my health. I am searching for another job, but with a completely different view on my future and with a view that my health will always come first. This view has only come about through my diagnosis of lupus.
My life is completely different right now to what it was two years ago, most importantly my view on life and myself has changed drastically. Being diagnosed with lupus brings so many challenges, but it has also brought about a completely juxtaposed relationship with myself and life to what it was before, for the better. I am learning to be kinder to myself, to treat myself as I would treat someone else, to slow down and enjoy the natural world around us, to explore my interests without fear of judgement from others, to connect with others within the lupus and autoimmune disease community, which I cannot recommend this enough to anyone who has just been diagnosed, to follow my dreams, and to not punish myself when I make mistakes, but to embrace it and learn as I live.
I hope this article can relate to someone’s own experience, and show you that you are not alone in your struggles. I hope that this article will encourage you to be kinder and softer with yourself. Above all, I hope this article allows you to continue on this journey of acceptance whilst being open to the community that you share in, as support will always be there for you.
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