It’s World Lupus Day! Share, Speak Up, and Stand Up!


I’ve been watching WAY TOO MUCH Pretty Little Liars the last couple days. The main theme there is secrecy, each main character has at least one major secret that they are afraid to tell.


Fear of people knowing, this is what binds them together as a group. The fear of an unknown entity telling their secrets.

This is how Lupus feels. The fear of someone knowing, not believing and not seeing. It’s an invisible disease. 43% of sufferers worry the most about physical inactivity and the social isolation due to the debilitating effects of the autoimmune disease. 47% feel that the impact on their daily lives is misunderstood, and 30% feel that the emotional impact is the most misunderstood.

If the top concerns for people with Lupus is inactivity and isolation, why aren’t we speaking up?

Lupus has always felt like my dirty little secret. How do you tell someone you are sick, when you look normal, act normal and seem normal?! My diagnosis took a long time, being told I had Lupus was a relief – because I knew what I was tackling…. But all of my symptoms are invisible. Invisible symptoms are hard to explain, hard to share and hard to show.

This of it like an iceberg…. 25% of yourself is visible. 75% is hidden, lurking in the deepest recesses of me is collection of symptoms that disrupt my insides.

I didn’t start to feel better in my skin until I started to discuss how I felt in it. So many Lupus suffers just hide, not talking about it; it’s hard for anyone to understand if you don’t share. If I’ve learned anything from watching TOO many seasons of PLL, it’s that more trouble comes from keeping the secret. Holding on to it. Hiding from it.

Got a secret

Can you keep it?

Swear this one you’ll save

Better lock it in your pocket

Taking this one to the grave

If I show you, then I know you

Won’t tell what I said

‘Cause two can keep a secret

If one of them is dead?

                -The Pierces, Secret

I was scared at first to be vocal about my Lupus. Why? Because even I didn’t know what I was in for or what I was experiencing. My main support group, at the time; was the same way. It seemed like something I should keep hidden, that I had to remain fake to myself and those around me.

For lil background on the matter, until recently I have been very fake with my life. I was not been honest with myself or others about what I wanted, needed or felt.

Reconnecting with L, adding James and his amazing family into my life and reconnecting in a better more solid way with my parents have helped me overcome feeling like I need to fake it. Fake it til you make it!

There is freedom in being honest about your symptoms.

It’s World Lupus Day….. Share, Speak up, Stand Up.

Make your invisible symptoms visible! My joints hurt – I feel like there are talons ripping apart my left side, from my hip to my knee. I’m also on fire. I have a hard time regulating my temperature and today it is through the roof!

Be vocal, be proud. It’s only Lupus.

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