By Tiffany Early
Marriage comes with many laments.
“Why can’t you put the toilet seat down?”
“The trash is seriously overflowing!”
But the one that is most frequently incited in my relationship is, “How long will it take you to get ready?”
That may seem like an innocuous question, but when it comes from my husband, I know what it really means- How can it possibly take one person so long to get ready? He’s not a jerk; he’s actually rather patient all things considered. It takes me practically the entire day to get dressed.
I often meet my husband for lunch during his noon break between classes- or the scheduled time is noon anyway. Many times, he’s getting frantic texts from me at 12:03 that say, “Clothing crisis. Be there soon.” He’s learned to go ahead and eat without me, because the crisis could last a while. I’m not a super-diva that has to be perfectly accessorized. Truly, short of a medical alert bracelet, accessories aren’t really my thing. Ehlers-Danlos Syndrome complicates everything- even choosing clothes. Here’s why.
Underwear- We might as well start from the bottom (terrible pun intended) and work outward. Underwear is a difficult choice, because it has to fit a variety of needs. First, if your body is already struggling to hold itself together (Thank you, faulty collagen!), every layer of clothing acts as another layer of skin. I like everything to compress as well as possible, because that makes my body feel less likely to fall apart. Secondly, there’s the whole issue of bladder problems. (Bladder issues aren’t unique to the EDS family, and every person with EDS doesn’t suffer from bladder issues.) If you’re living with a bladder that chooses to act independently of whether the time and place are appropriate, I feel your pain. When choosing your undies, choose big. I’m not saying to choose relative to a large girth; I’m saying that you have to provide room for yourself and your added protection. It has nothing to do with your actual clothing size. The larger the underwear- the larger your barrier between a possible leak and it being discovered by passersby. Ladies, there’s no shame in granny panties. Gentlemen, if you’re a large- go for a 2XL. No judgment here.
As for the upper realm of underwear (Bras! Gentlemen, keep scrolling.), it’s a struggle. If there’s underwire, my ribs tend to dislocate. However, my shoulders dislocate when I wiggle into certain types of sports bras. It’s trial and error, and both the trials and the errors take a while. Carve out some time in your schedule for proper underwear choosing, EDSers.
Pants- Whoever started the “leggings are not pants” movement can bite my dislocated hip. I only thought I understood pain until I dislocated a hip trying to put on jeans. EDS family, do not try to put on pants that aren’t stretchy. You’ll regret it. Leggings are my go to choice of clothing. Does it look good? I don’t really know. I haven’t gotten arrested for public indecency, though, so I’m going to keep working this style as long as possible.
Shirt- If you’re going into public, you must wear a shirt. No shirt. No shoes. No service. I know; life continues to be unfair. (Maybe Kenny Chesney was on to something when he wrote “No shoes, no shirt, no problem”?) The EDS struggle with shirts isn’t so bad. T-shirts are fabulous. As long as it fits properly (Don’t get me started on trying to wriggle into a t-shirt that is too small.), you can easily slip on a t-shirt without injury. Tell anyone who buys shirts for you to buy shirts a size larger. Trust me; it’s worth the blow to your ego to not pop out a shoulder while getting dressed.
Button front shirts are an entirely different story. First, you have to reach around behind your back to get your arms into the sleeves- prime time for a shoulder dislocation. Then, you have to button the little buttons. Here’s the conundrum- if you leave the buttons unfastened, you’re flashing the world. If you button the tiny buttons, your fingers will probably dislocate. If your fingers start dislocating halfway through buttoning the shirt, you’re stuck. You can’t continue buttoning, but you can’t unbutton in order to remove the offending garment. You have a problem that can only be solved by wearing a poncho. I don’t know about you, but I don’t own many ponchos that are appropriate anywhere outside a rainy sporting event.
Shoes- I’m hardly qualified to help you make shoe decisions. My idea of acceptable footwear is flip flops- not because I think flip flops are good for overall foot health, I just haven’t figured out what actually helps. Here’s what I know- ditch the stilettos. I get it; they’re cute. Seriously, though, you don’t want to spend the next week icing your knees and ankles. Step away from the uncomfortable shoes. Every experience I’ve had with uncomfortable shoes has resulted in me walking like a baby giraffe trying out his legs for the first time. Nobody wants to see that mess in public. I’m 4’11”. Believe me, I know the desire to want to snag a couple extra inches from shoes. However, take it from a girl that’s fallen on her granny panty protected behind several times, don’t do it. Strut on in your orthotics; don’t sideline yourself for a week because you wanted to be three inches taller.
Accessories- I know. I said I don’t accessorize. I don’t necessarily, but sometimes accessories help. For example, you’ll never see me without my wedding rings and medical alert bracelet. One keeps me safe in case I get sick in public; the other explains who that guy is that is following me around. (I’ve actually made my husband stop by the mall so I could buy a cheap, fake wedding ring set when I forgot to wear mine on a trip.) In addition, I always have sunglasses. I don’t care how overcast the weather seems, if a migraine decides to visit I’ll need light protection. Also, it’s wise to always have a bag of your necessary equipment. For example, I always have peppermints (my nausea savior), back up medicine, and a list of my medication with me. Does it matter if your handy dandy bag matches your ensemble? Nope, that’s your call. It only matters that you’re prepared.
Some challenges mentioned are specific to the Ehlers-Danlos community, but others apply to many in the rare disease family. We all have a plethora of concerns that we have to acknowledge before we can even leave home. There’s always the temptation to just give up and stay in bed. I understand that completely. However, we are more than our challenges, and we have a lot to offer the world. So, put on your stretchy pants, and show the world what you have to offer.
Oh yeah, and if you’re getting dressed for a formal occasion . . . just put on a fancy hat and hope that it distracts from the leggings and flip flops. At least, that’s how I would handle it.
Tiffany Early is a 31-year-old former middle school teacher who enjoys blogging from her back porch. She is an advocate for Ehlers Danlos Syndrome, Dysautonomia, and the chronic illness/ disabled community everywhere. Tiffany lives in Campbellsville, Kentucky (roughly the middle of nowhere) with her super fabulous husband Joe and tiny but aggressive dog, Zoey. She enjoys adventures with her husband, Netflix marathons with Zoey, and hanging out with her family- especially her super cute nephew and niece, Hagan and Mia.
Tiffany manages her blog ( www.crazychroniclife.wordpress.com ) where she examines life and relationships with chronic illness while laughing at the absurdity of the whole debacle. She also writes about her adventures in “Snooki”- the attention-seeking wheelchair. She also runs an online support group for those living with chronic illness. Tiffany strives to find the bright side . . . or at least the humorous side to living with Ehlers Danlos Syndrome every day and wishes peace, love, and health to the entire rare disease community.