Writing for the Good of your Lupus Health

It's been awhile!

Aside from the single stray post every couple of weeks, it seems like ages since I've posted here consistently. It's not for lack of fodder, mind you!  I have so many things I want to share: thoughts on new lupus medications, raising kids (and doing quarantine homeschooling) while juggling a chronic illness, other lupus epiphanies I've had during Covid, and so much more. All of which I really want, make that NEED, to share. But my Pillbag business took priority as I navigated life as a small business during Covid. It was nice to go all-in - our new and improved Amazon product listings, a small redesign of our Instagram page, and the launch of new Pillbag designs (coming soon!) are all  results of my focus during that time. 

But now it's time to get back to blogging.

Contemplating, composing, and writing about lupus are all so cathartic for me. Add to that, reading your comments and fielding your questions, and this blog has had played a huge role in my successful journey with lupus. I've had the chance to do some consulting in the pharmaceutical space, too, and I realize that writing about my experiences with lupus makes me better prepared to share my thoughts in a more professional setting.

So here it is, me making a sincere commitment (mostly to myself) to write and post here a couple of times a week. Before kids, before my Pillbag business, that seemed like an easy task. But life (and those kids!) sometimes get in the way. But I'd like to at least try.

So consider this my first post after my re-commitment to blogging. I figured highlighting the benefits of writing and journaling makes for an appropriate place to start!

Reasons Why You (and I) Should make a Commitment to Writing about Lupus: 

1) Emotional Medicine

If there's one thing I've learned about writing down my thoughts and feelings about lupus in the 12 years I've had this blog, it's this:


Plus the fact that there's no co-pay, no prescription needed, and no mask for a pharmacy-run required, I say writing about your experiences with lupus is the most valuable tool you have to coping with the disease. Your writing doesn't have be formal, typed, or shared. It doesn't have to be grammatically correct, guarded, or even PG. You can just let it rip - honest, open, and unchecked. Within days of my diagnosis with lupus 19 years ago, I started writing in a journal. I still re-read those first few entries, where I talk about "getting back to normal" and "waiting for my body to recover". I had very little understanding of what lupus was and how it was going to affect me for the rest of my life. Now, I'm able to appreciate how far I've come, and how much more aware and attuned I am to my body, my disease, and my ability to live well.

2) Keeps you Honest

It's almost a guarantee that writing about lupus will bring enlightenment you didn't even know you needed. Daily or semi-weekly entries in a journal will no doubt highlight recurring issues that need to be addressed. That fever you've tried to pretend isn't there, but has been documented in your journal for 3 weeks now? Yeah, that needs to be addressed. Or the fact that every day for two weeks you've written about how hard it is to get to the grocery store, or how a certain friend isn't being supportive, or how another friend always offers to help but you never take her up on it? Those things can all change. I think it's realizing they need to change that's the hardest.

In writing truthfully about your feelings, your disappointments, your setbacks, and your symptoms, you'll be reminded that you're not crazy, and you're not imagining things.  This is life with lupus. As long as you promise to record your successes, too, no matter how small they may seem (like allowing that helpful friend to bring by dinner!), you'll be reminded that you are making progress, you are making changes, you are doing your best to make life with lupus work.

3) Tool for your Appointments - Now, and in the Future

When I wrote about my Lymph Node Biopsy a few years back - the anxiety I was feeling, the reluctance I had to bringing up the issue in the first place to the doctor, how I lobbied for other options, how hard it was to wait for the results - all of that helped me tremendously. It's been one of the most referenced blog series in 12 years, so it obviously resonated with you guys, too! I've since had other procedures, and I've been able to reference my biopsy experience, remind myself how I got through it before, and ended up better prepared when dealing with my doctors.

When you jot down anything (or everything) about your experience with lupus, you're essentially creating a resource binder for you to reference as you see fit. Think it would help your doctor to see how you rated your pain every day since you last saw him? Look through your journal, compile the info so you can present it to him, and presto - you are armed and ready for your next appointment. It's a great tool for preparing your questions (or answers) in advance. And not just at the doctor. In the beginning, when lupus left me tongue tied and struggling for words, I would practice writing out my explanation of lupus, so when friends or co-workers asked, I would be ready. Anything that reduces the anxiety surrounding a chronic illness is worth doing!

So no more excuses. Writing is good for our health, and I personally plan on making it a regular part of my week. See you in a few days!


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