Meet Michelle, AIP Warrior
By Michelle Stander
"I had pain in the upper part of my stomach, and my lower back hurt so badly... The pain was so severe that I couldn’t keep anything down."
-Michelle, AIP patient.
Women in their 20s and 30s are often ignored — they are only treated for symptoms, not the deeper cause behind them.
I’ve been struggling with my health for 4 years now, and it just hasn’t improved.
Doctor visits, emergency rooms, hospitals, blood tests — you name it, I did it. There were never any answers...
Blackouts, pain, numbness, nausea, tremors, fatigue, muscle weakness, etc.
The whole of September was rough — I had pain in the upper part of my stomach, and my lower back hurt so badly... The pain was so severe that I couldn’t keep anything down.
I went to two well-known hospitals just two days apart. Both sent me home with severe pain, prescribing treatment for a kidney infection.
Michelle with the team of nurses.
At home, I struggled. The only thing that helped at the time was a hot bath... until that stopped working too.
Johan rushed me to the emergency room again, and they discovered I had gallstones.
On September 19, my gallbladder was removed, and we thought I would finally be able to live again.
But up until September 26, the pain was still so intense that I passed out. I immediately called Johan, and he rushed from work to take me to Zuid-Afrikaans Hospital’s emergency unit.
They admitted me immediately.
Michelle at the hospital with her family.
The first night was rough, because unfortunately, there are always nurses who don’t know what it means to truly be a nurse. After I passed out on the floor, Johan knew for sure something was seriously wrong with me.
He, my sister, and mother-in-law explained my whole medical history to the doctor, and she immediately decided that ICU was the best place for me. I was completely out of it and started behaving strangely. The doctor feared I might not make it through the night.
Johan and my sister kept everyone updated about my condition and how I was doing.
The doctor ran tests to find out what was wrong.
She informed Johan of the condition and asked for his permission to share it with the rest of the family.
She announced that it was porphyria, and that it was completely manageable. Everyone was relieved.
Michelle enjoying the beach.
The days that followed were a blur, and I was unaware of anything.
I thank the Lord for protecting and keeping me, for giving me a second chance at life.
My experience was very rough and painful. I wouldn’t wish that pain on anyone.
The hallucinations I had… how I begged the Lord to rather take me because of the pain.
Being paralyzed was extremely difficult for me. Starting everything from scratch again took so much energy and time.
How I experienced what felt like hell — how I thought everyone wanted to poison me, how I cried out to the Lord to save me from the darkness of my own mind.
“And my husband — you’ve been my greatest supporter. You stood by me through everything. Nothing was ever too much for you. ”
-Michelle, AIP patient.
I’m so thankful for the staff at Zuid-Afrikaans — they became my family, and I wouldn’t have made it without them. The pep talks, sitting by my bedside at 3 a.m. so that the ICU wouldn’t scare me, the “This girl is on fire!” every time I did something right.
Dr. Niyasulu, who was an angel and picked up on the problem early, who stood by my bed every day and held my hand. She gave all the glory to God.
The physios who crawled deep into my heart and made me realize I’m stronger than I think.
I’m grateful to the rehab team here at Muelmed who pushed me to get better — they also became like family.
“I’ve realized that having a disability doesn’t stop you from anything in life.”
Now to continue recovering at home, and hopefully soon be walking confidently on my own two feet again.
The Lord was, is, and always will be good to me.
Thank You, Lord, for being the main character in my story.
I’m so thankful for the people in my life:
My mother-in-law and father-in-law, who helped look after the kids to ease the load for Johan.
Nicole and Riaan, who were the kids’ personal Ubers.
My sister and Marco, who dropped everything in an instant to be with me.
My brother and Chantene, who made weekends easier by helping when something needed doing.
My dad, who stood at my bedside and encouraged me so much, and also helped me financially in a big, big way.
And my husband — you’ve been my greatest supporter. You stood by me through everything. Nothing was ever too much for you. You were willing to learn whatever it took to adjust to this with me. You are truly the best father and husband.
I love you all so much, and I definitely couldn’t have done this without you.
Thank You, Lord, for the lesson I could learn through all of this.
Michelle’s inspiring story.
Want to share your story? Contact us at katri@porphyria.org
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