A Lupus journey

Read Morgan's story about living with Lupus. Image courtesy of Imani Clovis via Unsplash

After a cancer diagnosis at age 6, Morgan, who is now 17 was diagnosed Systemic Lupus Erythematous, Kidney Nephritis, Hypertension and chronic headaches.

Her symptoms are significant and can have a huge impact on her day-to-day life. Morgan suffers intense fatigue, swollen joints, dizziness and migraines, as well as rashes and hair loss.

Every six months, she travels from rural NSW to Sydney Children’s Hospital, Randwick, for check-ups with her rheumatologist who help her manage her condition.

While chronic illness make life extremely tough, Morgan tries to go to school as often as she can, and she even has a casual job.

However, when Morgan’s health is at its worse, life can feel pretty bleak.

“When my condition flares up, I sometimes stay in bed all day and cry because of my joints hurting. I have to take strong pain medication to manage. Not being able to go to work sucks. I hate the fact that someone else is going through this pain, that’s why I wanted to write about my situation.”

Morgan owns a kitten who keeps her company. Morgan says “she acts like a dead set baby. She has a panic attack if I’m not home by a certain time, and once when I was in hospital for a night with a migraine my mum was sending my videos of how cranky she was. It was kind of funny.”

“I can’t believe soon I’ll be 18 and I’ve already fought two serious illnesses. I’m a survivor and I am so proud of myself because of the person I’ve become. Don’t give up. Our illnesses don’t have us, we have our illnesses. Be a warrior like me”, she said.

Editor’s note: Morgan wrote this poem about her experience with Lupus and chronic illness as a way to tell others exactly how she feels. You can read the poem below.

Breathe in. Breathe out.
Do you feel that? The air filling your lungs providing you with life.
Feels good right? Imagine having to gasp for air just because you walked across the room. Imagine having to prop yourself up with a pillow so the sharp stabbing pain around your lungs and in your heart would easy up.
Now, do some lunges and squats.
Feel that burn in your muscles? Imagine feeling that 24/7 simply while sitting down.
No, you aren’t just “sore“ from a workout.
Imagine you went out for a few drinks and woke up the next morning with a hangover.
Your head is throbbing, your stomach is aching and you’re thinking of throwing up.
You’re hating life and wanting to sleep the day away.
Imagine feeling like this daily without a drop of alcohol within your system. Fluids and greasy foods won’t save you. Not even a little.
Now imagine waking up and being unable to move. Your body is stiff and aching and your joints throb. Ouch.
Imagine being trapped in bed for days with a lupus flare.
Prepare to not see your normal life for weeks.
Prepare for multiple infections, plenty of doctor’s appointments, a trip to the ER (or two or three).
Imagine being poked over and over, blood drawn, IV antibiotics, IV steroids, fluids non-stop and still not feelings better.
Imagine fighting for answers.
Imagine not knowing.
Imagine not knowing how your body will react when it’s fully against you.
Do you feel the fear?
What does Lupus feel like? It feels like darkness, complete and utter darkness. It holds my body captive everyday and everyday I search for light.

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