an issue of chronic illness & transparency

A new post I’ve written for the National Multiple Sclerosis Society’s blog, MS Connection, explores the issue of how open someone should be when they have an invisible illness.

Do you tell everybody about your illness, immediately? Do you incrementally parcel out the info about what’s happening to you on an as-needed basis? Or do you only tell people when your symptoms force you to become public?

These are questions with which I still wrestle.

An excerpt:

Do I walk over and explain to the dude in the garage—the one who’s been giving me the stink eye ever since I pulled into a disabled parking spot—that, while I appear to be healthy, I actually have MS?
 
Do I tell my students what’s going on when I’m pressing my icy drink against my neck to cool me off while I’m teaching inside an overheated classroom, fretting about whether my MS heat sensitivity will flare up?

I face these situations quite frequently, wondering whether I should explain my MS to people so they will understand my actions and reactions, or if I should just keep quiet.
 
Four years into my MS odyssey, I haven’t yet found the sweet spot.

Read the rest of the post here.

Image credit from MS Connection.

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new post: when ms messes with your sense of taste

The National Multiple Sclerosis Society published my recent post, “A Loss of Taste,” about my vanishing ability to taste foods, as comfort food that I once enjoyed now give me nothing but disappointment.

Here’s an excerpt:

Somewhere along the way, my ability to savor certain foods has waned. Actually, it’s done more than waned. In some cases, it has warped into a bizarro situation where items I’ve long loved now suddenly taste of bitter disappointment.
 
What food now tastes terrible to me? My beloved morning coffee (with the exception of peppermint-flavored java), several red wines I used to adore, some marinara sauces, toasted everything bagels, and even the heartiest of sandwiches, unless they’re slathered with this spicy chipotle mayo I found.
 
Over the past two years, my ability to taste these favorites has gradually diminished. More recently, it significantly ebbed to the point where several food and drink items no longer taste familiar. The caramel-flavored coffee I bought the other week? It was outright disgusting in my mouth.
 
Is MS the culprit? My taste thief?

Read the rest of the piece here.

Image credit: National Multiple Sclerosis Society.

after you’re diagnosed with an illness: you suddenly notice it everywhere

iStock-961375112Way back in the late 1990s, when my husband and I were in fertility treatments, it seemed as though pregnant women were everywhere. In stores. On city streets. On TV and in movies. In my friend groups. At family gatherings.

When I was so craving a child — and failing to conceive one — seeing so many gestating women felt like grains of salt in an open wound. I distinctly remember trying to escape all things maternal on Mother’s Day 1997 when the angst of my infertility felt especially potent. I opted to watch NBA games. Certainly I could seek refuge from babies and all things maternal there. Wrong. Pre-recorded segments of athletes thanking their moms for all their support over the years were featured during breaks. Until I eventually became pregnant with twins, reminders of my infertility seemed painfully omnipresent.

I was reminded of those days after I was diagnosed with multiple sclerosis in 2014 and suddenly started paying close attention to every reference to the disease, whereas in the past, they’d whisk past me like the wind. The MS references I saw in pop culture in those early months after my diagnosis, were almost always dire and sent urgent pangs of fear about my future through my heart.

The National MS Society recently published my piece, “Fever Fatale” about this subject on its MS Connection. Here’s an excerpt:

“A fever could be life threatening.”
 
That single line from an old episode of “The West Wing” prompted me to immediately Google whether, in fact, a fever is fatal to someone with relapsing remitting multiple sclerosis, something with which I was diagnosed in the summer of 2014. Fresh from learning I had MS, this mere suggestion plunged me into a panic. A search of “fever and multiple sclerosis” yielded over 590,000 results.

Read the rest of the piece here.

Image credit: MS Connection.

what’s it like to have an mri when you’re claustrophobic?

My new piece at the National Multiple Sclerosis Society’s MS Connection blog tackles the topic of what it’s like for a someone (that would be me) to have an MRI when you’re claustrophobic, particularly when your head has to be enclosed by this lovely little thing called a “face cage.”

An excerpt of the piece:

“… [A] technician beckons me into the large room where the behemoth machine resides.

This is when the fun starts. And when I say ‘fun,’ I mean the opposite of fun. I really mean ‘terror.’ I mean a trapped-inside-something-and-can’t-get-out terror. It’s at this point when, after placing my head between two hard pieces of plastic, the technician clicks a hard plastic cage over my face and into those twin pillars. There is a relatively narrow rectangular opening above my face, but there’s no avoiding the fact that I am confined. The face cage is about two inches away from the tip of my nose. Its mere presence makes me feel like I can’t breathe. Like I’m being punished. Locked up.

Did I mention that I’m claustrophobic?”

Read the full post here.

new piece: #IAmAPreExistingCondition

ms_connection_blog_0823_finalMy first post for the National Multiple Sclerosis Society’s website, MS Connection — about when the politics of the national healthcare debate becomes personal — has been published.

It’s about when you, or someone close to you, has an illness that, should the Affordable Care Act’s protections for pre-existing conditions be repealed, could render you uninsurable, potentially putting your health and your family’s finances at risk.

The piece begins this way:

Since last summer’s failed congressional efforts to repeal many provisions of the 2010 Affordable Care Act (ACA), the hashtag #IAmAPreExistingCondition has peppered countless social media updates.

Current and former cancer patients use it on Twitter, Facebook, and Instagram. Asthma sufferers post it, too. Ditto for people with diabetes, mental health issues and heart ailments.

Read the rest of the piece here.

Image credit: MS Connection.