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8 First World Problems I Have With an Invisible Disability


Disclaimer:  All problems are relative to the person, situation, demographic and resources. The following “problems” are those I face as an admittedly privileged suburban woman with invisible (not obvious) physical challenges due to an inherited neuromuscular disorder called Charcot-Marie-Tooth disease (CMT).

The hashtag #firstworldproblems refers to those everyday, non life-threatening and sometimes superficial “problems” many of us encounter as middle and upper class suburbanites with disabilities. Despite our various chronic conditions and physical challenges, most of us are fortunate enough to have our basic needs met, like food to eat and a roof over our heads. The absence of food  and shelter are big problems!

With that said, it totally sucks that my top eight #firstworldproblems have to involve disability. Why can’t I just have “normal” first world problems, like learning that Starbucks has discontinued my favorite latte, or that I can’t  use my SkyMiles to book a vacation during winter break? Wait, I have those problems, too — ugh!

1. It’s hard to stand still while being spray-tanned naked.

Getting a spray tan when you have a neuromuscular disorder and wear afos Desc - Photo showing woman getting spray tan as it relates to having an invisible disability and bad balance due to CMT

You want to know what’s worse than standing buck naked in front of a total stranger while she closely examines and airbrushes every inch of your body Standing unsteadily buck naked in front of a total stranger while she closely examines and airbrushes every inch of your body.

Even though it’s hard and I don’t enjoy identifying myself as disabled, I needed to have a conversation about my invisible disabilities with the spray tan place beforehand.

First, there’s the problem of taking off your clothing and shoes. When I began going to Sol Potion Spray Tanning Studio, they didn’t have chairs in their tiny changing rooms adjacent to the spray rooms. Once I explained my “problem” to the owner/sprayer, she immediately took a chair from the lobby and brought it into the room.

I use a wall to hold on to when asked to bend over (sorry for the visual) and because I already told the technician that my balance sucks, she moves extra quick. Although the entire process is uncomfortable, it’s well worth it in the end. I mean, If I’m gonna make the effort to take off my leg braces and stumble around a pool in a bathing suit, I might as well attempt to camouflage my thigh dimples and look bronzed and healthy doing so, right?

2. I Won’t Win the “Neatest Chip Pile” Award At the Blackjack Table

Casino games are hard to play when you have a neuromuscular disorder and disabilities like charcot marie tooth disorder
Due to progressive hand neuropathy, I struggle with a lot of things that once came easily, like writing with a pen, buttoning clothing, using a zipper, twisting off toothpaste caps etc. On a recent trip to Las Vegas, I discovered yet another task that requires a steady hand and use of a pincher grip — playing blackjack.

When you lack fine motor dexterity, blackjack chips are not easy to grip and hold onto. I quickly learned that the unspoken, “stack your chips into neat piles” rule was a futile effort. Each time my fingers touched a chip, it felt like I was playing the nightmare game of Jenga, where you’re supposed to place pieces on top of an unsteady tower without knocking it down. Impossible.

Also, there’s a whole lot of hand coordination and math involved — neither are my strong suits. But, once the dealer got the hang of my ambiguous “hits” and ”stays” and started to compute the math for me to speed things up, we eventually got on a roll; I was up $300 for about 30 minutes that day… until I wasn’t.

3. When Traveling, There’s a 50/50 Chance of Setting Off Metal Detectors and Not Having Time for a Sit-Down Airport Breakfast

TSA Precheck helps if you wear afos leg braces and have disabilities but not always
Airport security is a pain in the as$ for everyone, but especially for those of us with not obvious disabilities. I’m not gonna go on and on about the challenge of having to take off your shoes or explain why you can’t take them off and need to be patted down instead. Many of you have been there, done that.

But here’s the really annoying part. In order to avoid the ordeal of taking off my shoes or having to explain that I wear leg braces and can’t remove them, I decided to make an appointment at the TSA office and pay for pre-screening. This, I was told, would allow me to go through the faster TSA pre-screened line where you didn’t have to take your shoes off or go through those scary (and hard to balance in holding your hands over your head) enclosed machines. Wrong!

There’s a “randomly selected” clause in the TSA pre-screen agreement, which of course I didn’t learn about until I was randomly selected on the very first trip I took as a new TSA pre-checker. Those extra 30 minutes reserved for a healthy pre-flight/vacation egg white omelet turned into a stress-filled wait for a Starbucks latte and a 3000 calorie chocolate chip muffin I stuffed in my mouth before boarding.

4. My Nail Technician Complains About Me in Vietnamese

Women getting a manicure illustrating how its difficult to do so when you have a disability hand neuropathy
I have switched nail places and technicians countless times. Unlike some of my “able” friends who enjoy getting manis and pedis, I rank going to a nail salon just slightly above getting my teeth cleaned at the dentist. Basically, I go because I have to. My fingers suck (hand neuropathy) and it’s difficult to grip and open things, so having decent nails sometimes helps. As for my feet, at home I use an electronic file on a regular basis to prevent callouses, but my toenails need more TLC than I’m capable of providing.

The manicure problem is mostly during the polishing part. My hands literally cannot stay still while the technician applies polish and especially while waiting for them to dry. Pedicures are more involved because my feet are fused (they have metal plates inside to prevent movement/injury) and won’t “turn” on command.

First, there’s the fact that I have to remove my leg braces sitting in a narrow space while curious onlookers take notice. Second, after the technician sees the leg braces, she inevitably begins to say random things about me in her native language to nearby co-workers. Then I have to somehow communicate that I have a “problem” with my feet, but there’s nothing she needs to do differently. Please don’t skimp on the calf massage part.

I feel sure when I leave the technician is thinking, “She’s a pain in the ass, but at least I got a good tip.”

5. I Can’t Hear All the Good Mom Drama From the Bottom Bleachers

If you dont have good balance due to a neuromuscular disorder like CMT or MS you have to sit on the bottom bleacher and often miss out

Can you believe they still make aluminum bleachers without handrails? When I was a school-aged kid, the thought of tripping and falling down them was just as frightening as having to run relays in gym class. Despite those fears, my balance must not have been so bad back then, as I have a few memories of sitting with my friends at the very top.

I had a flashback about this last year when my son Blake was playing basketball for his high school freshman team. When I arrived at the first home game of the season, a few dads I knew were already there and sitting on the very top level of bleachers. I waved and took a seat near the bottom. Actually, I sat on the very bottom and then scooted my ass up another row so I could at least see the game.

When my mom friends arrived, they stopped by my unofficial “disability” and grandparent area to say hi and chat for a minute before making their way up to join their spouses at the top. I experienced what teenagers call FOMO (fear of missing out) that day. I wanted so badly to have the balance to get up and down from the top without assistance, but I knew the risk wasn’t worth it. So I sucked it up as those of us with physical challenges learn to do.

Don’t even get me started on stadium seating at concerts. At least there I blend in well with the unsteady drunks.

6. I Can’t Slide a Hotel Key Card and Hold Coffee At the Same Time
Its hard to hold a hotel key card when you have a neuromuscular disorder and disability
I haven’t done a study, but I’m thinking those hotel “security” elevators that won’t budge without using a key card rarely if ever hinder actual crime. I mean if you’re a bad guy, wouldn’t you just take the stairs anyhow? Unless you’re a bad guy with physical challenges, the stairs are a lot faster, right?

Those “security” hotel elevators are pointless and just an added stressor for those of us with weak hand grips and other disabilities. It’s hard enough to hold the flimsy key card still in order to open the room door. How do they expect people to bring hot coffee back to the room and fidget with a card one-handed? Perhaps key card elevators were never intended to provide added security, but instead were a genius hotel marketing ploy to increase the number of guests ordering overpriced room service?

No way I’m falling for it – next hotel stay, I’ll just use the deadlock on the door to prop it open while I get coffee and wait until someone else goes into the elevator with their key card. Hopefully, said bad guy isn’t reading this.

7. I Take the “Fine” Out of Fine Dining

I get stains and make a mess eating due to having disabilities and a neuromuscular disorder CMT

I’m a hot mess most of the time, but especially when eating. People are always picking food out of my hair or alerting me to imminent food stains and potential disasters. “Be careful, there’s ketchup on your elbow,” or “I’ll get some club soda, it’s hard to get zip sauce out unless you treat it right away.”

There are always crumbs on my lap when I stand up to go the bathroom, and busboys tend to give me confused looks in between courses, when they have to clean up more than just the salad plate.

I am also a bit high maintenance when ordering (my family if reading this, is definitely nodding their heads in agreement). “Please, may I have a tall glass with ice and a straw, not a stem glass?” “Can you please chop the salad? I have trouble with my hands.”

When I was a little girl, my mom enrolled me in a manners class called White Gloves and Party Manners. They taught us table etiquette like how to set the table, which fork to use with what course, and how to eat “like a lady.” I’m thinking of creating a table manners workshop for people with disabilities. I’ll share all of my best “eat like a Lainie” secrets and giveaway Tide to Go Wipes and designer inspired adult bibs.

8. My Halloween Costume Choices Are Limited

Finding halloween costumes that work with afos leg braces is not easy

I didn’t really love playing dress-up or even trick or treating as a kid. It was OK when I was a young girl and just went to a couple of houses with my dad and sister in tow. But I hated it as a pre-teen. This was before I had to have surgery on both ankles to prevent them from turning/breaking and well before I began wearing leg braces as an adult.

I’m sure I would have liked trick or treating had it been with just one or two friends, but we went with large groups of girls, and it was always a struggle to keep up and not trip over whatever last-minute princess gown I found at Kmart.

For the last 10 or so years, I’ve been invited to an annual adult only Halloween party given by a fun couple in my neighborhood. The year before their first party,  my whole world changed when I found a pair of knee-high flat leather boots I could walk in and that fit comfortably over my leg braces. They were a total game changer as I was no longer destined to a life of frumpy dresses and I found I could look stylish pairing short dresses with tights and tall leather boots over my leg braces.

However, there are only so many age-appropriate and somewhat sexy Halloween costumes that work with tall flat boots. Believe me, I’ve spent endless hours searching on Pinterest. I figure Batgirl has another two or three years max before she’s forced into retirement.

All photos provided by contributor.