The Ups and Downs of Living with a Chronic Illness

By Jai Trebucias

I am proud to say that at 23, I've lived an extraordinary life.

At 12 years old, I was diagnosed with an autoimmune disease, Systemic Lupus Erythematosus, or as more commonly known, Lupus. To put it simply, my immune system has been on a life-long mission of attacking vital organs such as my heart, kidneys, skin, and bone because it thinks they are foreign bodies. It sounds scary, but its all on a microscopic level and I am forever grateful that for the most part, I look perfectly healthy on the outside. Upon getting diagnosed, I gained a second home; complete with four white walls, uncomfortable beds, IV lines, trolleys full of needles and questionable food. My daily routine consists of taking about ten pills in the morning and another five at night to decrease the chances of a destructive lupus flare happening (when it is active and is attacking my body).

I was born into a Christian household and grew up with a Christian faith. I seriously questioned why God let something like this happen to me. Despite the setback, I kept my faith strong. I was always reminded to believe on His bigger purpose. Surely, something good would come out of this right? Although my health is closely monitored, I've had quite a few aggressive lupus flares, leaving me incredibly fatigued and bed-ridden for days. The first of many occurred during the end of high school, marking the beginning of the deterioration of both my kidneys. I was put on an extensive regimen, a bunch of different medication, including weekly pulses of chemotherapy for three months, all in attempt to suppress my immune system.

Although I was always sick and spent half of my life in the hospital, I always tried to stay positive. I learned never to question God as to why all these things were happening to me. The prevailing verse that always popped into my mind was Philippians 4:13,

"I can do all things through Christ who strengthens me."

It was true; God had given me the strength to experience a good life, with the help and support of my family and friends. Whenever I told my story to other people, they would always be surprised and say how I don't look sick at all or that my attitude towards life was something surprising. I was dealt with a bad set of cards, but I was determined to make the most of it. I was never going to let my lupus win.

However, in between my second and third year of university, they found suspicious lumps on my stomach. A gastrectomy was immediately performed to remove these, so now a part of my stomach is missing. 2015 was a rough year for me. There were a few major events in my life, which led me to lose myself and contributed to the decline of my mental health. I saw my old self quickly fade away and dark thoughts started to rule over my mind. I spent a lot of time in the hospital that year, not for my lupus but because of anxiety attacks and suicidal thoughts. Amongst all this, I no longer felt God's presence in my life. I stopped praying and going to church. I pushed away everyone that cared about me. Naturally, because I wasn't thinking positively anymore, I let my physical health deteriorate as well. I experienced a very aggressive flare, leaving me with kidneys that were close to non-functioning. But I was given a light at the end of the tunnel. My doctors called me and said they found a kidney match. I thought I was going to be okay - until during my surgery. My blood pressure started to drop, eventually stopping to a complete halt. I was pronounced dead on the table. They induced me into a coma, lasting five days. Everyone thought I wasn't going to make it. But I did.

I like to think it was God's way of calling me back to Him.

I constantly listened to "Oceans" and  "Touch the Sky" by Hillsong United back then and I am convinced that these songs were my saving grace. Now every time I hear these songs, I feel an overwhelming sense of comfort knowing that everything will be okay. Ever since then, I have been gradually rebuilding my relationship with God. At this point, I would love to say that it's stronger than ever, but to be completely honest, it's still a work in progress (excuse the pun!). I believe everyone work through these things in their own time and I am slowly, but surely making my way there. Even so, I will forever be grateful because now I know that despite what happens and no matter how many times you drift away from God, He will always be there waiting patiently for you.

I spent the summer of that year finding myself again and embracing the inevitable ups and downs of living with a chronic illness. It's been a long, but incredible journey. My mental health is stable again and I can't remember the last time I thought about wanting to die. However, I will never be 100% physically better because unfortunately my kidneys are completely ruined, and the lupus has started to attack my heart. 

Although my life will never be "normal," there will always be one constant thing in my life - the never-ending support God has given me through my family and friends.

Despite having gone through all that I have, I never think of my illness as a curse. Evidently, I've had a few near-death experiences. But because of this, I've always treated my lupus as a blessing in disguise. As cliché as it sounds, it has pushed me to live my life to the fullest. I am the girl who has a million and two friends. I am not afraid to love love. I am the girl with the overly excited smile in group photos. I am the girl that pushes for group photos. Everyone knows me as the spontaneous girl who is up for anything. I am always saying 'yes' to adventure. From impulsive 3-day roadtrips to Wellington, to 2am Maccas runs, I am your girl. Lupus is a part of me, but it will never get the best of me. I know that no matter what, God is and always be on my side. I hope you find comfort knowing that He'll always be on your side too. Life will probably keep throwing me into the deep end, but I have faith that everything is always going to be okay.

Illness doesn't define self-worth - it's how you carry yourself in light of the challenges it comes with.

Everyone experiences their pain in different ways. I've experienced some of life's lowest lows, but have also known what it feels like to be on top of the world. Life is never going to be easy, but it's as easy as we make it.


about the author

Hello, I'm Jai! I spend too much money eating at Auckland's best food places. You'll mostly find me on my bedroom floor chilling with my doggo, Brax. Follow me on Insta @jaitrebucias to find out what I've been up to recently.