#SuckitLupus: Blogging with Lupus

#SuckitLupus: Blogging with Lupus

May is Lupus Awareness Month, and I have one little word (okay, hashtag) for this disease:

#SuckitLupus

Lupus, you suck.  You turn people's lives on its head.  You make people's immune systems attack their own organs and tissue.  Who the hell does something like that?  That's like making someone ram their own fist into their own face times one hundred.  And it's not as if you can escape your own immune system; remove it from your body or turn it off.  You kinda sorta need your immune system.  So, thanks, lupus, for exploiting a bodily system integral to sustaining life.

YOU SUCK.

Lupus, according to the Mayo Clinic, is an autoimmune disease that causes inflammation throughout the body.  It can be difficult to diagnose because the symptoms mimic that of other conditions and no two cases present in the same manner.  Some people have flare-ups and others have constant inflammation.  Some people have this lupus come on suddenly, and others experience it as a slow-building, chronic condition.

Common symptoms include:

  • Tiredness
  • Fever
  • Joint pain
  • Headaches
  • And sometimes, a butterfly-shaped rash across the cheeks and nose

Lupus is more common in women than men and most commonly is diagnosed between the ages of 15 to 40.  Moreover, lupus disproportionally affects African-Americans, Latinas, and Asians.

If you've recently been diagnosed with lupus, you're not alone.  There are plenty of bloggers writing about their personal experience with the disease.

Queen of Spain not only fights hard against lupus; she fights the good fight to make sure that everyone experiencing lupus has access to good health care.  She recently wrote about how Obamacare affects people with chronic health issues.

You need to understand something about Lupus patients. We are chronically sick. Like…as in, all the damn time. That means we are CONSTANTLY in and out of the hospital, in and out of the ER, at our doctor’s office, undergoing treatment, missing work, having tests done, undergoing X-rays and MRIs and really weird brain tests to make sure we haven’t lost any cognitive skills. We accumulate thousands upon thousands upon hundreds of thousands of dollars in medical expenses per year. That means we NEED an insurance plan that has things like NO annual caps, NO penalties for pre-existing conditions and NO waiting periods as we get SICKER while we wait and NO lifetime limits.

erin

Image: Erin Kotecki Vest and Kids

The mission of Lupus Sistas is to fill that "void of resources and support networks available for black women with lupus."  She does that by giving readers a peek into what it is like to live with lupus, and that means addressing the emotional side as well as the physical.

I’m learning that blogging is my therapy. Sometimes I like therapy – and apparently for the last seven months I didn’t since I didn’t type a word, ha! But I believe a good writer has a conviction about being honest with their words and a great writer won’t let themselves write from a place they’re not passionate about, haven’t felt or experienced. Oh I tried, but I can’t fake the funk. I can mask my true emotions many ways, but not through writing. I think that’s why I had that long period where I didn’t blog because I honestly wasn’t ready to think through what was going on with me mentally and emotionally.

Despite Lupus is also the author of a book of the same title, and she's been recently out-and-about on a speaking tour, educating the public on lupus.  She recently wrote about lupus and hair loss.

I was also holding onto my hair out of fear. Because I've been contending with this current flare since August, I was playing it safe, just in case my increased symptom activity decided to set off a round of hair loss. But I decided that playing it safe for too long can be detrimental. I was no longer just being conservative, or preemptive. I was actually being fearful. Month after month, I was setting myself up to anticipate the loss, to fear its imminent arrival. But now, after almost 6 months, it's time to get back to living. Proactively. With lupus in tow.

Tell us about other bloggers with lupus to create a helpful roundup for those newly diagnosed.

Melissa writes Stirrup Queens and Lost and Found. Her novel about blogging is Life from Scratch.

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