The Joy of Belonging 

However, today, my only digital footprint is LinkedIn and youtube.

“Why? What happened?”

Allow me to show you how it came to be.

For most of my adult life, I battled symptoms which were all over and no doctor could figure out what disease that was.

But five years ago, there was a breakthrough.

Endometriosis.

Not what you were expecting?

Well, neither was I.

Within a month of weaning off the hormones I noticed new joint pains, dry eyes, dry mouth, tummy pain, severe fatigue, brain fog, cold hands and fevers.

Things moved so fast such that within a month I was too sick, admitted and got new diagnosis.

Sjogren's syndrome. Systemic Lupus Erythematous. Fibromyalgia. Raynaud’s Syndrome.

The list has since ballooned.

I froze, accepted, denied, mourned, got angry, cried and then as if following a script, quit all social media and avoided all social situations.

I craved silence. I needed everyone to be quiet.

Maybe I wanted to hear the doctor's words clearly?

Or was it because now I had no mountains or water falls to show off?

Was I afraid of being found out?

My personality changed. I went quiet. Silent. Withdrawn.

Like that princess, I was locked in. I stopped going out, the sun burnt my skin and induced terrible flares. I became a prisoner in my own body. Everything had to be UV proof.

Work. Home. Church. Hospital. Pharmacy.

This became my routine. Painfully plain and simple.

I was unable to maintain friendships. I was angry, felt misunderstood and misunderstood others.

I missed many events. Vacations. Trips. Opportunities.

This was because since diagnosis, I was stuck in a never ending flare for two years. Such sickness can not allow room for social media or a social life.

I found healthy people noisy, petty and annoying. I wondered how they felt, being God’s favourite and taking it for granted.

I hated colour. My clothes were black and grey. Loose pants. Big jackets.

I loathed photos. I never took any because my body had changed. I was swollen from my face to my feet.

This is why I was only left with likedin. I figured that there, people were just focused on work. It was less noisy.  But even there, people were boasting of their achievements. Yet there I was, unable to progress in my career because of lupus. I kept it even though I never used it.

I cherished YouTube, for all the cat and dog videos it dished out. Those kept me going.

Things took a turn for the better this year, in May.

I was determined to mark World Lupus Day with other warriors. I went online and searched for lupus awareness events in Nairobi. That is how I found Thrive Community.

I was anxious and eager to come out after two years in isolation. Unsure of my body.

My friend and her two kids accompanied me to the event. It was a beautiful day. I was so encouraged to see warriors both men and women thriving despite lupus. They had fun walking. They sang, danced. Cut cake. They had careers and thriving businesses.

My biggest surprise was seeing lupus babes walking in the sun while I had to use an umbrella all the time. I only managed 1km of walking and was super proud of myself.

I made acquaintance with a lupus and endometriosis warrior. At that moment, I knew that I was not alone.

The Thrive Community WhatsApp Support group is the place to be for every warrior. There we laugh, learn, celebrate each other, promote our hustles and at times, mourn together.

It is because of this new found joy of belonging that  I am bold enough to share my experience here, at work, with my friends and on my linkedin newsletter.

I pray that God will establish the community, keep us healthy and long enough to spread the message of hope, love and belonging.

I also pray for the founders, that God would give them more grace, strength and love to continue the fight for all autoimmune disease warriors.

If you are an autoimmune disease warrior and are looking for a support group, you are welcome  to thrive with us at Thrive Community.  You too will find joy in belonging.

Dr. Everlyn Thiong’o