Life was simple a few years ago. Uncomplicated and carefree, the toughest decisions I had to make revolved around coordinating clutches with outfits and which shade of OPI nail colour I fancied. At 22, I lived a life like most millennial girls and didn’t pay too much consideration to the tough strides of age and illness.
I was yet to discover how life as I knew it, would change in an instant.
After a chilled weekend away with friends up Sydney’s coast, I experienced my very first in a series of lupus flare-ups. Who knew, spending a day lazing about in the sun, would send my body into complete destruction mode. One minute I was sleeping suspected heatstroke away, and the next I was waking up to discover severely inflamed finger joints along with debilitating muscle aches.
Unaware of the cause of this sudden onset of strange symptoms, I made haste and contacted my GP who then referred me to a rheumatologist back in Sydney.
I felt scared and confused as to what was happening, because up until this point, I had generally been a regular, healthy and active 22-year-old. Sure, I enjoyed the occasional night out drinking but I had never felt so trapped within my own body before.
I walked into his office and scanned around the waiting room. I was greeted by the gazes of a few elderly people and a receptionist who assumed my father was the patient in waiting. After explaining I was actually the one who had made the appointment, the lady kindly led me through to see the doctor. As I sat down, he didn’t waste any time. “Right, your blood test results have come back and in conjunction with your GP’s notes, we suspect you have Systemic Lupus Erythematosus, it’s an auto immune disorder which causes your body to mistakenly attack its own healthy tissue and organs.”
Confused, I stared at the doctor blankly. I had never heard of these words in my entire life and it seemed the more he began talking about inflammation markers and throwing around code names like, CRP and ANA, I could feel my hands starting to sweat. Nervously, I asked him a simple question, “Can you fix it?” to which he responded, “There is no cure for lupus, however, through managing the right medication we will be able to alleviate the symptoms you are experiencing.” He handed me the prescription for a very high dosage of steroid treatment and a pathology request for follow up blood tests. Needing the relief, I obliged, picked up my prescription and headed home.
Listen: The Mamamia Out Loud team discuss what life is like with a chronic illness.
Within a few days, I started to feel a bit better and blissfully assumed the worst was behind me. Three weeks later, however, I fell sick with the flu and once again, my lupus flared up. Very similar symptoms came about, only this time I was struggling with extreme exhaustion and fatigue. I couldn’t move out of my bed for days and when I did I was met with a disfiguring rash across my face, which left me feeling unrecognisable. I remembered my GP telling me that my immune system, now compromised, would be fighting like a bat out of hell and I would need to be very careful around other sick people. I guess being a uni student on a primary teaching placement wasn’t very helpful.
As my symptoms worsened, my rheumatologist had to increase my steroid treatment once again. The flow-on effect? I gained a lot of extra weight and developed a characteristic moon shape around my face from the treatment. I felt like my body was being controlled by someone else and I was merely on standby watching this condition worsen day by day. I shut the world out. I felt ashamed and embarrassed to have so drastically changed in appearance. My self-esteem hit an all time low and I resorted to cloaking up and creatively masking the swelling around my body.
I didn’t want to see my friends and only a few close family members really knew what I was going through. Becoming so reclusive in a matter of months, I developed bouts of anxiety and depression. Every day was a battle with my mind and body to look in the mirror, to take a step outside of my front door and to face a world of strangers. I slowly lost my identity. Sitting in the shower, I watched my hair fall away in clumps and I wept uncontrollably. Everything about myself that I thought I knew, was slowly but surely fading away.
I conducted diligent research and discovered that lupus is considered to have a genetic predisposition which becomes triggered through a range of environmental factors from illnesses to stress. In my case, it appeared that exposure to UV radiation was the beginning of my downfall and I now had to take extra precaution when venturing outdoors. Lupus is a very complicated and chronic illness. Whilst to others, I may appear healthy on the outside, the fibres of my body on the inside tell a very different story.
Searching online for support groups and others to share my story with, helped me to realise I wasn’t alone. It was disheartening at first, to hear of many other women who were in much worse off situations than mine, their conditions leaving them unemployed and without assistance. Particularly because the symptoms of lupus are so varied and it’s difficult to diagnose chronic fatigue as a disability, many are left without government and health aid.
Eventually, I made the decision to leave university, moving across Sydney to the south where my husband and I decided to start fresh. I focused all of my energy into getting better and educating myself about lupus and what it means to have an autoimmune disorder. It was a case of become bitter or become better. I chose the latter. Through carefully managed treatments from a myriad of specialists, I was able to carry two successful pregnancies and find a way to revive the life I once lost.
Watch Selena Gomez discuss her lupus diagnosis with Ellen DeGeneres.
It certainly hasn’t been an easy road and there are days where my body literally gives up, leaving me bed-bound and inaccessible. I’ve found it incredibly difficult to open up to those around me for fear that they simply just wouldn’t understand. Along the way though, I have learned that the path to wellness, is paved with the support from my family and friends. To be able to function as a mother and wife, I had to make important choices. Reviewing my lifestyle and making appropriate changes so that I can still get up in the morning and stand long enough to make my kids breakfast, was necessary.
In some ways, lupus has defined the person I am today and has made me realise the extent of my limitations, learning to accept what I just cannot change. I want other women with lupus or chronic illnesses to know that life will always have its uphill battles, but you can, and you will, get through this. I want other people out there who may have loved ones experiencing the carefully coordinated life of an autoimmune patient, to know that your support and love is what helps us to carry through the day.
I am lucky enough to be able to live a somewhat normal life with my family. At 28 years old, I know I have a very long road ahead of me, but I will be choosing the path of least resistance, knowing that I have lupus, but lupus does not have me.