Saturday, March 19, 2011


"You don't look sick."

"You look so good today! You must be feeling better."

How do I reply? Do I say, "Thank you!" and leave it at that, knowing someone is trying to encourage me?
Do I reply with the more honest, "Thank you for the compliment, but no, I'm really not feeling well at all." or "I wish I felt as good as I look then!"

One of the drawbacks of an "invisible illness" is that looks can be deceiving. As God told Samuel in l Samuel 16:7, "The LORD does not look at the things man looks at. Man looks at the outward appearance, but the LORD looks at the heart.” What you can see isn't always reality.

Most people see the "face" of a healthy-looking me, the vast majority of the time. They cannot see that I live with a ticking time-bomb called XMRV that can land me hard down in bed with the smallest provocation, or sometimes for no apparent reason at all. They can't see that I'm one step away from walking past a balloon and landing in the hospital for a latex allergy like I did this week. They can't see that I struggle every day to get out of bed and try to lead as normal of a life as possible, despite immobilizing fatigue and every-changing levels and kinds and cycles of pain or cognitive dysfunction and a variety of other symptoms ranging from the annoying or distracting to the downright unmanageable.

So today I though I would show you two different faces of me, the one most people see, and the one that better reflects how I typically feel, the one you usually don't see because when I get to the point where my inward struggles manifest themselves so outwardly, I'm buried away inside the protective bubble of my own home (or in this case, the hospital). Here I am, sick in both pictures, but you would only know if from one.

Added to say, as to how I can reply to those comments, my friend, Lisa Copen, has put together a bunch of great ideas on her website:

Helpful list of latex products and latex-free alternatives: Directory of Latex Free, Non Medical Products - UK

Latex-free event planning and alternatives. Including tips such as, "Teachers that use balloons for in class pressure experiments can try inserting a rubber balloon inside of a clear 18" plastic balloon just before class.  This will allow most experiments to be conducted without other modification".

"A quick google search turned up over 200 schools in the US alone that banned latex for the 2006-07 school year.  While my googling turned up lawsuits on both sides of the issue (parents with children that have a latex allergy suing to force a ban and parents who sue over being saddled with the sometimes very high additional costs involved when a ban is put in place at their child's school), as entertainers we should expect these numbers to continue to grow on a year-over-year basis.  "

Non-latex balloons and ideas.

I love this sign!

My more recent article on When Balloons Are Scary is at


Anonymous said...

Jenni, nicely articulated!
In my circle of family and friends they say that I have a "Game Face" that keeps me looking like everything is going well. Those who are closest to me can see right through the "Game Face" and can almost measure my pain level. I'm still trying to figure out just HOW they can do that... :-))
Keep up the beautiful writing, Jenni!

miriam said...

Love you for the beauty within. "I see in you the glory of my King" is what the song says :)

Kara said...

This really spoke to me, Jenni--thanks!