this is my coming out.

I often forget.

I can go 20-30 days (sometimes longer) feeling just fine. I am good. I am great. I exude a sort of happiness. 

And I forget.

2.28.2016

And in those times that I have conveniently forgotten, I convince myself that I am both fine and well.

I am neither.

I have been living with systemic lupus erythematosus (SLE) for 4 years. I received an official diagnosis in March 2012.

What does this even mean?

(Read about my journey with post no. 2 | this is thirty one: part one.)

Each day is qualitatively different. I can usually sum up each day with one of two situations:

I feel fine and I am not fine.

I have spent the last four years basically hiding from lupus; though, there have been a handful of times when I reluctantly shared it with people:

1. when it didn’t seem absolutely necessary to withhold the truth

2. when I exhausted the same old “I wasn’t feeling good” and the “no, I did not have a cold or the flu” and the “hell no, I am not pregnant.” (Yeah, people have asked me that.)

3. when I am felt exceptionally forthcoming and uncaring (basically the same as #1)…as in, I had a sort of diarrhea of the mouth and wanted to share some shit…basically I just needed to be honest…this is probably the same type of logic that people who have been on the run for a long time use…like, I am just tired of running.

I have been in hiding because, well, I was in denial for most of these years. I did not want this thing to be a part of my identity. I was by no means given a death sentence. But everything was gonna change for me. It was already changing. 

Don’t go outside without being covered or without sunscreen. Just limit direct sun exposure altogether.

Here, take these pills. We don’t know how or why they work…but they work. You’re also gonna need a special eye exam twice a year because, oh yeah, these magical pills might jack up your eyes.

Make sure you maintain a job that provides health insurance. (This part wasn’t a change, but turned in to a sort of prison sentence.)

I’d been in hiding (and this is the most pervasive reason) because I am a private person. Very, very private.

So what I’ve posted hundreds of photos and albums on Facebook.

And I may or may not have countless selfies stored in my terabyte-sized Google Storage.

I might’ve even shared neatly curated, nuanced tidbits of my daily comings and goings (like this, this, or this)…but I keep 95% of my life under lock and key, bih!

Over the years, I’d seen people on social media sharing and oversharing when they were ill, unhappy.

To me, it was excessive. Unnecessary. Attention-seeking.

Everyone gets sick, I always thought. Why would they share that? Who cares?

I judged the over-sharing weirdos despite knowing full well the power in sharing, the power in writing it out, the power in the release.(Note: See the further reading list at the end of this post.)

I’m just one of many hundreds of people who blog about their illness or trauma, and, according to Dr Tom Farsides of Sussex University, this is not surprising: “Writing is an effective way of processing and coming to terms with challenging and potentially traumatic events,” he says. “But blogging is more than the mere act of writing. It also fosters senses of both control and social connection, each of which is crucial for psychological wellbeing.”(Sue Eckstein, 2010)

Was I wrong for trying to dictate and censure how someone else dealt with their own illness or trauma? Sure. But this is just one of many truths I am willing to share here.

I have committed to start this blog series–wolf bite: human variability–for the last two years. I’ve renamed and reshaped and rebranded it 100 times…and each change has been a means of avoiding the task at hand.

I was gonna do it for my 28th birthday in homage to a Lucille Clifton poem. Then my 30th birthday came and went. And now I am 31, inching closer and closer to 32.

You can read the full Clifton poem online. This screenshot is via Chesnutt Library’s Articles and Databases; I searched EBSCO and Alexander Street Literature.

I have outlines and planograms dictating how I would share, what I would share, and how often I’d share it.

That clearly never happened. I chickened out.

What would people think? 

Despite knowing I cannot control that. And more importantly, that shit don’t matter!

What if potential employers read it? 

Despite knowing I’d eventually have to share with my immediate supervisor (at the least) anyway.

Once I hit publish, there’s really no going back.

I could write and publish with an unassuming pseudonym to ensure I was allowing myself to be completely honest…but that’d be like cheating…right? Being an anonymous blip in the never-ending vastness that is The Internet would be defeating the whole damn reason for writing in the first place.

Those 20 – 30 days of feeling good and wonderful don’t last. Ever.

I don’t live in happy denial for long. I can always count on something to remind me of what I have: sore hands, rash on my cheeks, fatigue (oh the fatigue!), persistent migraines. Surely, these things are not necessarily signs of lupus; but, they are how my version presents.

So this is my coming out: I have lupus. I am living with lupus.

This is lupus.

My story is different. But I am not special.

There’s a chance that sharing my experience with this fairly common aberration will help someone. Including myself. 

next time: read no. 2 | this is thirty one: part one.

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Further (Peer-Reviewed) Reading:

1. Chronic Illness Bloggers

2. Why People Blog About Illness

3. Why More Patients Should Blog About Illness and Death

4. Blogging Illness: Recovering in Public

5. Communicating the Experience of Chronic Pain and Illness Through Blogging

6. Blogging–It’s Good For You

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