I Didn't Know I Had a Story, Until I Told My Story

Life has a way of surprising us. Sometimes, the most profound stories emerge from the most unexpected places. My journey with systemic lupus erythematosus (SLE) taught me that resilience and hope can flourish even in the darkest moments. Here’s my story — a testament to the strength of the human spirit.

Diagnosis

It all began with a persistent pain that came from my joints. I brushed it off as nothing, but when fatigue and skin rashes joined the party, I knew something was wrong.

After countless doctor visits that led to dismissals because X-rays showed nothing wrong, I went 2 years more without addressing the painful situation. Then a shift in pain went from joints to my lower back and it was at this time they did blood draws and labs.

3 months later while in the hospital, the verdict came in: systemic lupus erythematosus (SLE), commonly known as lupus. The lower back pain came from my kidneys which at that same time I was diagnosed with lupus nephritis and end stage renal failure. I had never heard of lupus but apparently my immune system had turned against me, attacking healthy tissues and organs.

Dark days

Lupus doesn’t play fair. It’s a shape-shifter, masquerading as various ailments — joint inflammation from avascular necrosis, that led to a left shoulder and right knee full replacements. Kidney problems that led to a year of peritoneal dialysis then a kidney transplant.

I endured lung failure which led to using oxygen for over 3 months, liver disease, an undiagnosed brain disease, and skin lesions. I also got diagnosed with other overlapping diseases/conditions such as Sjogrens syndrome, rheumatoid arthritis, mixed connective tissue disorder (MCTD), GERD, gout, shingles, and many more.

Taking over 30 pills a day at one time caused me to gain a lot of weight and I felt insecure about myself. There were times I felt depressed, but my mental health did not allow me to fall into depression.

Near-death encounters

Lupus didn’t stop at organ failure, fatigue, joint pain. It took me to the brink of death more than once. I remember the hospital room — the sterile smell, the beeping monitors, and the doctors and nurse’s conversations. Heart failure was the most extreme time for myself and my family. It’s a scary time when the doctors tell your family to plan for his funeral.

No matter how serious it got, each time, I fought back. I fought for my family, my dreams, and the life I refused to surrender.

Turning point

After heart failure, a kidney transplant and a clinical trial procedure, I went into remission for more than a few years with minor symptoms only. It is when I got diagnosed with a brain disease is when I had to give up my career. At this time, I realized I had a choice.

I could let lupus define me, or I could redefine my narrative. I picked up a pen and started the process of creating my own nonprofit spreading lupus awareness, called Male Lupus Warriors Corp. I told my story!

My story spilled onto the pages, a raw, unfiltered account of pain, fear, resilience and power.

Sharing my truth

I hesitated before sharing my story. Would anyone care? Were there more men out there diagnosed with lupus like me? But then the messages poured in — people who saw themselves in my words, who found solace in knowing they weren’t alone. That’s when I understood I wasn’t alone either and our stories connect us, as well as heal us and they inspire us to keep fighting.

I didn’t know I had a story till I told my story.

The power of resilience

Lupus remains a part of my life, but it no longer defines me. I’ve learned that vulnerability is strength, and sharing our struggles can ignite hope in others. So, to all the readers, tell your story. You never know whose heart it might touch, whose spirit it might lift. Because sometimes, we don’t realize we have a story until we find the courage to tell it.

As I told my story, I realized that Pain was my Power. Pain gave me the strength to understand my pain and to use it to help people embrace their pain. With all my advocacy, the quote I put together defines me perfectly. “I Turn My Pain Into Power, My Power to Progress and my Progress to Success!”

Emmitt Henderson III, lupus warrior, advocate, speaker. Advocate for resilience. My journey continues, one word and day at a time.