A guide to Tableau Conference for the invisibly ill (and their friends)

If, by chance, you're reading this from America, then there's a 50/50 chance you have a chronic medical condition. If you do, there's a 96% chance your condition is "invisible", or shows no obvious outward signs that a person could recognize.

You can't see it.

Assuming you're in that category, it's estimated that you've got a one-in-ten chance that this invisible illness is, at least in some ways, disabling. As these are all subsets, that leaves you with a 5% chance of reading this with a disabling invisible illness (ignoring the fact that the invisibly ill may have been more likely to click on this).

That's the conservative estimate. A higher estimation is at 10%.

So, let's do the math on Tableau Conference: over 17,000 people attended in 2018. That means that, statistically speaking, we can "expect" between 850 and 1,700 people will have an invisible disability (of course, assuming the same number of people attend in 2019, and assuming that invisibly disabled people aren't less likely to attend, which is probably not a safe assumption).

If you're one of those people, then in some ways, you're like me.

Here's a bit of vulnerability: I have Ulcerative Colitis, a form of Inflammatory Bowel Disease (IBD, and different than Irritable Bowel Syndrome, IBS, which is problematic in its own ways). You may have detected the word "bowel" there, or noticed that "colitis" sounds a lot of "colon".

Instead of some weird medical diagram of an inflamed digestive tract, here's pizza. 

Don't worry, this post isn't going to be about poop. Not too much, anyhow.

Yes, UC and IBD cause problems that leave me quite familiar with the quality of toilet paper a venue chooses (I'm quite opinionated on this subject, btw).

But there are also things called "extra-intestinal manifestations". As an autoimmune disease, IBD has many symptoms that are similar to other autoimmune diseases that primarily affect other parts of the body: pain and fatigue being the most notable, at least for me. In general, pain and fatigue are among some of the most common symptoms of many invisible disabilities.

My specific illness isn't important here, although it might help set the stage for my tips below. What's important here is that if you are invisibly ill or disabled, you aren't alone and these are a few tips I learned last year to not only survive this crazy thing called Tableau Conference, but to really enjoy it.

And for those of you that aren't invisibly ill, reading these tips might help you be aware of the invisible needs of one of every ten people you meet at the conference.

I let go

This gif was inevitable.

The pressure to maximize is immense. We have to get everything out of it that we can. Last year there were 437 sessions, each one providing new perspectives and new examples of the art of the possible. We may know people there, and consider them friends -- but friends we only get to see in these brief moments of professional overlap. Or, perhaps we've met new people in online communities, and we can't wait to meet them in real life. For those of us being sent by our employers, we need to make certain the money was well spent.

Disabled or not, there's more to do than can actually be done. There are simply limitations in the speed at which the Earth rotates. For us disabled, our bodies can present significant limitations on top of this. Personally, I get tired more easily. Also, given the bathroom aspects of IBD, I'm quite cognizant of whether or not I'm near a place with adequate plumbing (also, I have weird superhero powers on detecting the nearest bathroom. It's a thing). Also, sleep is one of three causes of a flare-up in ulcerative colitis. Consequently, I gotta get my zzz's so my colon isn't raging at me.

My saving grace has always been a strong effort to be at peace with letting go. I had to let go of the idea that I would pack every moment full, and then I had to let go of the things I wanted to do, but couldn't. Not to get too corny here, but this is pretty much the materialization of the concept of acceptance with illness and disability.

But inherent to letting go is knowing when I need to, so...

I listen to my body

Disability doesn't always give you a nice warning. Sometimes there isn't a yellow light, it just gets red. For me, though, there's more than three shades. Maybe there's 5, if we're in the mood to create arbitrary buckets.

 for those struggling with color-vision along a traffic light metaphor, we've got dark green on the left, moving through hues to get to dark red on the right.

On the left (dark green), we've got normal. After 10 years of this illness, my green means I've got enough energy to do my stuff, assuming I've either got caffeine or time for a nap. My pain level also runs at about a 2/10, perhaps a 4 after eating. 

Light green means I might need to work in some breaks through the day, and my pain might periodically bump to a 5. 

Yellow means I'm feeling like I desperately need a nap, my pain is chilling at a strong 5 or 6, and eating might bump that up to a 7. 

Orange is when I need a day off, just to sleep. My pain is probably hovering above 7, and eating doesn't really exacerbate things because it's a constant pain. 

Dark red means I need to be in the hospital. 

Again, things don't always move through these buckets at a predictable pace. For ulcerative colitis, there's a thing known as Toxic Megacolon, which besides being a terrible name for the next MCU villain, it's an example of how I could go from a green to a potentially lethal dark, dark, dark red. That's incredibly rare, though it's more common for people who are spending a lot of time in orange. 

Regardless of whether my body is giving me a heads up, or letting me know I'm already in a dangerous zone, I have to listen. I have to be able to stop when my body demands it. 

Of course, "stopping" isn't a thing one bakes into their itinerary of fun, so...

I have a plan A, B, C

Had to dig through a lot when I googled "Plan B"

I literally have to strategize my daily existence.I'm constantly thinking of backup plans in case something goes wrong, and then thinking of backup plans to my backup plans.

Do I have all of my medications on me so they can't get lost if my carry-on has to be checked? Do I have the bottles with the proper labels? Do I know the nearest pharmacies? Do I have copies of my doctor's info? Do I have my medical history written down and accessible? Is that documentation up-to-date with my latest medications? Where are the nearest hospitals? Are there any special laws that prevents immediate request and  access to my medical information, should I be unable to provide it? How can I reserve an aisle seat so I can quickly get to the bathroom on the plane? Have I packed an absurdly high volume of underwear relative to the duration of my trip? Is the Restroom Access Act in effect in this state? Do I have my backup foods -- things I know are safe, like Boost nutrition shakes and low-fiber, easily digested nutrition bars? Where are convenience stores where I can buy these? Where can I take a nap, if needed? What do I do if, for some reason, I'm unable to sleep in my room (e.g. partying in the adjacent room)? Can I afford to reschedule my flight, should I need to leave early?

This, perhaps as much as anything else, is one of the most exhausting parts of having a chronic condition -- so much so that there is a disability metaphor to describe it, known as Spoon Theory.

These backup plans are incredibly important -- especially the ones for "being in the red". I once had some relatively minor problems on an international vacation, and saw the hotel physician. He prescribed a medication that was contraindicated to my illness (but I was just diagnosed, so I hadn't yet memorized the classes of medication that I shouldn't take). That medication triggered internal bleeding, and I almost died.

Most of the time the situations I'm encountering aren't quite so severe, and my backup plan is more of a temporary escape from all the chaotic excitement. However, this means that I might need to gracefully bow out, so....

I have my "excuses"

I've been there.
There are times I need to resort to a backup plan, and that typically means I need to stop something else. It might be a meal with friends, or attending a session, or a braindate, a networking event, etc. So, I've learned things I can say to gracefully bow out. 

After 10 years, I've gotten quite comfortable with my illness and learned to share about it to help others (hence this blog). Even so, not everyone else wants their night ruined by thinking about the ramifications of an ulcerated colon. And, I'm not always comfortable sharing at every moment -- sometimes, because I'm in pain and I just don't want to talk. Other times, because I'm too tired to talk. And other times, I might not have a reason. 

So how do I step away? With canned "excuses" blended with honesty.

I'm too tired or in pain and need rest? "I'm really looking forward to <insert event>, and I'm feeling tired -- I'm gonna go rest up for it" or "I'm a morning person, so I'm getting tired"

Weird questions about my bizarre off-menu, customized order? "I'm allergic", or, if I'm just skipping out, "I ate not too long ago".

Need to hit the bathroom for perhaps longer than another person might go to the restroom? "I'll be right back, I'm going to run to the restroom and then give my family a call." 

I don't use excuses too often -- mostly, I just don't share details. However, there are some events (especially professional) where I'd prefer to dodge the natural questions that come up, so these are the sorts of smoke screens I toss up to distract from the actual illness. 

Of course, it can be helpful to have those trusted people I can be honest with -- sometimes, talking is important. So...

I always have my support group

You know you teared up when you saw this, Martin Scorsese. 
For my first Tableau Conference, my support group was available via the phone. I used it a lot, but not quite as much as I expected.
This year, I've developed enough of a relationship with some folks that I've got that network at the conference. That doesn't mean they have UC or IBD or even an invisible illness, but that doesn't matter. These are empathetic and compassionate people I've connected with, and that's all I need. It doesn't mean I'm sharing the gritty details with them, but I don't share those with anyone except my medical team, nor do I need to. 

These are people that have my back. I'm grateful they are at the conference, but for many of us that present network doesn't exist. I've still got my phone list, and I'll still be calling them.

Epilogue: IronViz

This year, Tableau Conference presents an even trickier set of challenges: I'll be competing in the IronViz. Consequently, I'll have a really intense schedule, at least for a few days. I'll be rehearsing, practicing, on stage, and then I'll have some obligations after the event. My schedule will be quite packed, with lots of "obligations" (quotes because I'm honored to be a part of it, and I don't want the negative connotation from obligation).

With all of this, all of the tips above are even more important. My body doesn't care if I'm on vacation, at work, in a car, on a plane, or on stage. I have a permanent disease. These tips, among many others, help me manage the symptoms and navigate events like Tableau Conference. The tips only become more important when the stakes are higher and the days more densely packed. 

However, I've a new addition to my support group: Tableau, and more specifically, my Sous Chef. I've recently met her, she's amazing, and incredibly understanding. We are already looking at the schedule and the requirements and figuring out game plans to navigate them with grace -- at least, whatever grace I can when I'm at the mercy of my last meal. I'm just hoping I don't fart on stage.

Huge thanks to Tableau and the way you treat your fans.

For the rest of y'all...see you in just a few weeks. Come say hi, cheer me on, and cheer on the other two contestants and their incredible talents. If you can't seem to find me, it's possible that "I'm a morning person", or "I'm just giving my family a call."

Love y'all.

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