The secret ingredient to living well with lupus: A dose of hope.

Wishful thinking. In the 16 years I've had lupus, it hasn't gotten me very far:

I wish I felt better.
I wish my joints didn't hurt.
I wish my hair wasn't falling out.
I wish I didn't have to sleep all the time.
I wish I didn't have lupus.

I say "I wish...", but what do those words really mean?

It implies that while I wish I felt better, I don't.

I can't.

And I won't.

In wishing, there's a notion of negativity, an actual impossibility, that creeps in, silently smothering any expectation that life with lupus will, can, or should get better.

This concept, in fact, is exactly why I wrote my book, Despite Lupus years ago. I simply couldn't accept that life with lupus had to stink. I knew there had to be a way to live well, with lupus in tow.

Granted, I couldn't "wish" the illness away. Instead, I had to come up with physical accommodations, mental workarounds, and spiritual exercises in order to make my life with lupus work. In essence, I had to develop positive strategies that would give me order to find the strength, courage and patience to live well with my chronic illness.

Thus, when I ran across a republished article on hope, written by Dr. Norman Vincent Peale in a recent issue of Guideposts magazine, I was reminded of what separates wishing from hoping.

As he so eloquently puts it, "When you hope -- really hope -- then a magic ingredient comes into play. That ingredient is expectancy. Expectancy says, 'This desired outcome can happen. Right now it may be just a dream, but it's a realizable dream.' When you start hoping instead of just wishing, then expectation is stirring in you."

This is what can help propel us to live well with our chronic illness. Hope gives us the ability to make the lifestyle changes we can, to get the rest we need, and to accept the help we deserve. Once we decide that it's okay to expect more from life with lupus - that expecting life to get better is acceptable - then we give ourselves permission to do whatever it takes to make that happen. To do our part in managing the disease.

Hope gives us the clarity we need to make tough decisions about medications or treatments. It allows us to tackle difficult conversations at home or at work. And it helps us to work closely with our doctor, to continue striving for health and wellness.

The quote below appears in my book, because, for me, it encapsulates how transformative life with lupus can be. With lupus comes the opportunity to overcome an experience in life that is devastating, life-altering, and tragic. Some days you may not feel up to the challenge. But allow yourself to hope, and then expect that you are.

"Affliction produces endurance, 
and endurance, proven character, 
and proven character, hope, and 
hope does not disappoint." 

(Romans 5: 3-5)


yumz said…
With faith, there is hope. I believe. It sucks having this. There will aleays be hope, let's just have faith. This is what I'm doing now e, keeping the faith, looking for a reason to hope that I will recover faster. I am in the hospital for almost a month now. The usual problems that arise whrn youre in a country where lupus awareness isnt that broad yet. For those who follow your blog, i would like to appeal toyour kind hearts 💕 to please check this link, and help a bit if you can. Even prayers will do.

Thanks. I miht be banned and judged fir advertising vut well i juat hope you guys understand. Thanks, Gof bless and keep the faith and hooe in your 💕.
Nicole said…
Thank you, Sarah!

I have really been struggling over the last month as work has been stressful and I have hated my illness for making it so hard to deal. This is exactly what I needed this morning as I face another week, and try to find the way to take care of myself in the midst of it so that I can endure.


Sara Gorman said…
Thanks so much for your feedback on the post! So glad it's helpful. Hang in there -- keep balancing all those balls as best you can, and if one falls, remeber, it really is okay. :)

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