Writing while chronically ill.

This is so accurate!

Years ago I was diagnosed with Systemic Lupus after years of being told nothing was wrong and my pain and exhaustion were all in my head. I cried with relief when the truth was discovered. Unfortunately, once we knew what was wrong, the doctor sent me on my way without any information about the disease and no means of support.

After a few days of shock recovery, I called the Lupus Foundation of America and started up my own support group. I advertised in our local paper and waited to see if anyone would show up. Twelve people came to that first meeting and the group ended up growing and meeting for ten years!

During that time, I journaled like a mad woman and spewed every thought and feeling into a notebook (or twelve). At the same time, I was also writing short stories and had started and restarted the first chapters of two books. Those stories sat in a file for a long time, untouched as I tried to maintain my young family (a husband & 2 small kids), my house, and my health. It was exhausting.

During my last year as the group leader, I was thoroughly burnt out and trying to figure out a way to raise awareness that wouldn’t take such a toll on myself or my family time. Thankfully, the answer presented itself.

I was hosting a Lupus information booth at a large local event when a man came to the table, looked at the pamphlets and signage then asked a single question that would get me back to writing. He said, “Lupus. Does that mean you turn into a wolf?”

It was at that moment my first book was reborn.

I say “reborn” because it was one of those “filed” stories I mentioned above. I’d written a few chapters of a werewolf story but had literally left off at a cliffhanger and stuck it in that folder. For 12 years. **My apologies to my friend Cheryl who read the original and waited 14 years for the actual book!

You may be wondering why it took two extra years for the book to come out, and here’s why. When you have a chronic illness, or multiple ones as they tend to come in groups, on most days you have to make energy choices like a mountain climber on Mount Everest makes oxygen choices. Some days you have lots of energy. Some days you have so little that even showering can wear you out and send you back to bed.

Another not-so-fun truth is that stress – either good or bad – can set off a flare-up or exacerbate one if it’s already going on. And one of the more infuriating side effects is brain fog. Yup, that’s a real thing brought on by our diseases or the meds used to treat them. If you’ve ever had surgery and been half awake coming out from being put under, then you may remember that spacy feeling where speaking clearly took effort, and trying to keep track of what was happening around you seemed overwhelming. That’s what brain fog is like and it can last for days, weeks, or even months. Now, imagine trying to keep a plot line moving forward while processing like that.

You may be wondering why I’m telling you all of this. Well, I guess for a few reasons. First, because Lupus and its effects (as with many other auto-immune diseases) are highly misunderstood and I just can’t stop trying to educate folks about it. Second, I want to give a shout-out to all those authors and artists who, despite their illness, still manage to turn out amazing stories and products. There are more of us out there than most folks know. And finally, I’m here to say you are NOT alone. Your strength and creativity ARE valued. DON’T give up. Your work is a gift to the world and an inspiration to others.

Now, to all of you who read this far, thank you! Thank you for supporting my writing, for your good humor, and for helping motivate me into my third book, Waning Is Worthless! I will keep you all in the loop as progress is made.

Blessings to you all,

M.J.