Make it Ecstatically Loud!
Make it Ecstatically Loud!

Blessed by an auto-immune disease at the age of 11, being different wasn’t really an option at the time, but a fact I had to embrace at a very young age. They call it the silent disease or the silent killer so I decided to make it ecstatically loud while passing around everything I learned not only about the disease itself, but especially about how strong you can be no matter what. How positive attitude can turn your life upside down and how you can master the art of resilience.

My journey with lupus has started since the age of 11 when I lost all my hair, but was only discovered 12 years later, with different other symptoms mainly: joints pain, sun sensitivity, Hashimoto’s syndrome, and bad blood circulation. They say when life gives you lemons, make lemonade. With lupus, I learned to make champagne and celebrate life in all its shades!

I started losing my hair at the age of 11 and it took me one single year to lose all my hair (from head – to toe).

Depression became a lifestyle when strength was the only thing I had to show.

Losing all your colors in only few months, hating your face and avoiding any mirrors for two consecutive years, wasn’t the adolescence I expected. I thought I would never leave home if I had to wear a wig. I thought I would never accept myself with a bald head, lost eyebrows and no eyelashes.

But we adapt and our survival need is always stronger.

I wore wigs for 12 years, and right before discovering that I had lupus, I decided to go bald all the way. I made this decision the day I knew that I have a lot more to give and show than only my physical appearance. For me, it was a statement, one that would give a lesson for every person I meet including myself.

Few months later, I was diagnosed with lupus after the different symptoms stated above; luckily, my lupus wasn’t active.

According to my Doctor, it is my positive attitude that is not letting it affect me or get any worse. It apparently started years ago but no one spotted it. I lived with its symptoms not knowing that these are not normal. Painful and swollen joints were something I had always known to be part of my life.

I also had different incidents when exposed to the sun, but I also thought that it was normal to have skin rashes or dizziness. The symptoms were always there but I always took them as normal physiological responses to normal stimuli while they were not normal at all!

I’ve always told my sister: I’m an adolescent living in the body of a 70-year-old person.

At the age of 16, I started losing my nails and had some skin depigmentation; in addition, my skin couldn’t bear the sun anymore and I used to faint every time I get exposed to the sun for some time.

All of the above symptoms slowed down when my stress management became more effective. The words of my Doctor resonated so well and I directly flashed back to when I wasn’t emotionally stable how my symptoms were getting worse.

To support my experience with some scientific facts, I had to attend some online courses on positive psychology and the science of well-being.

Today, I am a grateful person who manages her stress really well. I eat healthy food and exercise regularly. I learned to embrace my down moments and take them as opportunities to reflect on life.

With the purpose to pass around my experience, I have launched my personal blog last year “Piece of Tee”. I have also organized some support groups for people sharing the same medical condition and I am now working with them on founding the Lebanese Lupus Association.

It is worth to mention that for each their own experience and their own perspective. In fact, the lupus symptoms and experience differ from one patient to another and this was proven during our focus groups where we all share the same disease, but with different intensities, different symptoms sometimes and different ages/generations. The most obvious thing in common apart from lupus, was our love for life and our positive thinking.

Reaching out to the Lupus Research Alliance is also part of my mission to pass around my experience and to spread a word of hope to all of you.

Here’s my website: www.pieceoftee.me
Instagram handle: @pieceoftee

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