National Endometriosis Awareness Month: My Story

In honor of National Endometriosis Awareness Month, I’ve decided to share my endometriosis story.

Endometriosis is a chronic illness affecting the endometrial lining of the uterus that causes it to spread throughout a woman’s body. It typically affects older women, but I am 27 and developed endometriosis at age 14.

The first time anyone could tell I had endometriosis was when I was a young high schooler. When I was 14, I bled onto the Youth Pastor’s leather car seat in a Cadillac full of boys. In my youth group I was the only girl, and I was in excruciating pain – and embarrassment. Not to mention I was the Preacher’s daughter, and Preacher’s daughters are to be perfect and not unclean.

We were on our way to a regional convention for our denomination to compete in various disciplines, from bible knowledge to puppetry, and were being quizzed on the book of Ruth in the car. Eventually we stopped at a rest stop on our way to Dallas and we saw the seat was doused in blood. The endometriosis was imminent.

My periods have always been unpredictable. This is a symptom of endometriosis. Age 14 was no different. I had previously bled through at a dentist office to be shamed by the dental hygienist for not knowing my cycle by now, to which my mother yelled at her, “Her periods are irregular!” Thankfully, we both always kept overnight maxi pads on us.

But where was my mother now? She got out of the car and noticed I was woozy, unsteady on my feet, and practically carried me to the bathroom after apologizing to the Youth Pastor, who thankfully had grown daughters. In this gross roadside bathroom stop, I screamed over the toilet as fibroids came flowing out of me. This was the first time in my life I thought I was going to die, endometriosis would claim me, and I begged mom to take me to the ER. She said no, we were on our way to a Jesus conference, and He came first. I needed to learn that.

I was sick and lightheaded the whole time I was there. We didn’t win gold in Bible Quiz. I mostly blamed myself and mom for that. What I didn’t know was that it was really endometriosis’ fault.

To my good mother’s credit, after Easter when we arrived home, she immediately took me to a Gynecologist. They ordered an ultrasound, the noninvasive way to test for endometriosis, and sitting in the lab I was afraid people would think I was pregnant as I downed glasses of water. I was as skinny as a string bean, but suffered from an eating disorder that made me feel as if I was the size of the moon. I went into the ultrasound, and I swore I could hear the technician laughing. I’m sure he wasn’t, but I was 14 and not used to the medical world that would soon become my whole life.

In two weeks, the doctor phoned us in to tell me I had endometriosis and polycystic ovary syndrome. My records have since been lost and no one believes the endometriosis part, but I was recently re-diagnosed with polycystic ovary syndrome.

I do know that the endometriosis diagnosis was real because my mother was there when the doctor talked about the lining found in my ultrasound. She talks about it, and my grandmother and great-grandmother also had endometriosis.

The doctor quickly prescribed birth control pills and the endometriosis improved. However, eventually they stopped working, and I was given a Mirena IUD.

I experienced pelvic pain similar to when I first developed endometriosis, and over the course of six months learned that my body was rejecting the IUD.

I’m now on the Kyleena IUD, and once again, my endometriosis is improving. The tricky thing about endometriosis s that it is fickle – it can love you one day and hate you the next.

According to womenshealth.gov, endometriosis “may affect more than 11% of American women between 15 and 44.” 11% of American women, this is for you. May you feel less alone in your endometriosis journey.

Style for Spoonies

Style for Spoonies

Please note that this post is intended for personal empowerment, not to push anyone into a mold. Style does not equal fashion, as will be discussed later in this post.

My goal is to let everyone know there are parts of themselves they can still have fun with, even with chronic illness. I hope I do not miss the mark.

I am a certified Girly Girl ™ and Chronic Illness Warrior Queen. It is my duty as a feminine chronic illness warrior to have some fun and write about something that tickles my fancy, which is how to develop a personal style post-diagnosis.

What is style, and what does it have to do with chronic illness?

Paste Magazine outlines style as a sort of essence or tone  to a person or thing, like food or writing. When a person becomes chronically ill, it is easy to lose their essence. So much of how daily life is lived must be changed. Everything from food, speech, walking to clothing choices must differ due to health conditions. But the essence of who a chronic illness warrior is, who you may be, dear reader – must not change. It must adapt.

Why should people with chronic illnesses care about style?

Firstly, a person with a chronic illness does not have to care about or prioritize style! I certainly don’t 5 out of 7 days out of most weeks. 5 days is a good week. However, when I do have the spoons to waste on style, I do feel better, and I am all about feeling better. I would like to make other chronic illness warriors feel better too. If you, as a person with a chronic illness, believe you would benefit from a silly cathartic article written about style for spoonies, please read on.

Types of Spoonie Style

The Lounger

If you are a certified pajama queen and live strictly for comfort, go you! You are putting your health first. This is good! No need to feel shame here, spoonie fashionista.

The Yoga Pants

There’s a lot of fun you can have with yoga pants. Yoga pants are basically the new blue jean. Once again, you’re practically street style honey.

The Leggings and Flowy Shirts

This is a definite style many musicians and bohemian ladies rock. Nothing to be ashamed of here, my chronic illness warrior princesses.

The Big Dresses

I don’t know if it’s just me, but hey soul sister if you’re reading this! Do you suffer from rib cage pain? Is your stomach and lower body in too much pain for yoga pants or leggings? Welcome to the Dress Mess tribe!

Everybody Else

Of course, this list is not exhaustive. There is no one way to describe the many ways women with chronic illness dress, and it’s usually function over form. This post aims to put a little form to the function, acknowledging form is less important than function, but can be used at times to add some style, or fun, AKA essence.

The Fab Fibromyalgia: My Chronic Illness Makeover

Exhibit A: Myself, the Spoonie Bard.

I had always been into rockabilly and retro fashion, a bit of a throwback if you will. My street style had always been a bit dark, glittery and rock and roll. Lipstick was always my cosmetic of choice as I had eye allergies.

Before my illness, I wore ripped cutoff booty shorts, complicated lace and tulle black structured blouses tight under the bust, combat boots, dark wash skinny jeans, a full face of makeup, thrifted motorcycle jackets, clear contacts, and a short pixie haircut I blow dried with a hair dryer and straightened with a flat iron every day. Each morning I showered, shaved, and applied fake tanning lotion. My hair was always colored.

At the core of my look was an essence, or style: edgy that said “I’m here. You can see me and judge me immediately so my anxious mind won’t go on a worry trail imagining all the mean things you’re saying in your head. I know you’re noticing the purple hair, the fake bake, the eyeliner, and the combat boots.”

Now, let’s look at me after  chronic illness.

After chronic illness: pixie haircut styled naturally curly or straight with a hot air brush, natural brunette hair color, tortoiseshell vintage cats eye glasses, loose fitting T-Shirt dresses in darker colors from Old Navy, vest cardigans, tall chestnut riding boots, ASICS sneakers, grandpa sweaters, an investment black pleather Guess jacket with gold details, knit polka dot dresses and shirts, flowy knee length skirts, and a bold lipstick color. I am currently pale as a ghost and hairy as a horse.

The current essence screams 1950s librarian to me. A librarian that one day, in January, hopes to have purple hair again. Still, it’s different – wearing my hair curly makes me look like I have hair from the 1920s and barely an inch long. The call of “look at me so I know you are first” still stands. I still have an essence, even if I can’t wear pants anymore. Despite chronic illness, I still have a style.

How to Develop a Style After Diagnosis

  1. Decide what you want to say when you enter a room

Is it “You saw me first and I know what you thought?” Are you daring and bold in this manner?

If so, experiment with a bold lip color or eye shadow. Which one of these you choose depends on if you have eye problems like I do (I suffer from ocular migraines and every allergen imaginable).

If you want to tell someone you are glamorous, invest or thrift for good accessories. A luxury handbag, jacket, jewelry piece or scarf can go a long way to dressing up yoga pants and a T-shirt.

2. How trendy are you?

And, generally speaking from experience… Trendy clothes are far less comfortable.

This determines what era you’ll set yourself in, and how up-to-date on fashion trends you’ll be. It also helps determine a budget, because if you’re trendy, you have to buy clothes more often!

Going for a more classic, timeless style means buying less clothes over time, unless you suffer from body fluctuations like me. However, generally knowing what you like makes it easier to shop online or at a thrift store once you know whether you’re more dramatic or low key.

Trendy vs. classic helps determine what type of fabrics you buy. I like to thrift for Old Navy knit dresses. These are rayon cotton or jersey knit dresses with a polyester blend. Generally I find these fabrics are gentler on my skin than the tulle or lace I used to wear. I aim for different patterns and polka dots in different colors. However I am a polka dot and not a stripe, and you may be a stripe; do as you wish girl.

Always choose fabric over looks. That sequin shirt is going to really rub you sore. But I guarantee you a jersey knit top with the right pattern or embellishments that do not stick up will treat you right.

3. What are your limitations, and can you have fun with them?

Do you use a mobility aid? Do you need to wear glasses? To wear pants or not to wear pants? Can you only wear pants?

If you use a mobility aid such as a cane, consider something elegant or antique if you’re female. To find one of these, I suggest eBay. I recommend The Disabled Diva’s Six Stylish Canes to Keep You On Your Feet for more direct references. If you’re partial to Ireland or Irish folklore, I once used a shillelagh as a mobility aid. They are available on Amazon.

As for glasses being trendy these days, there are so many options to appear on point. I prefer cat eye because they make me look more sophisticated and slim my face, and I cannot wear contact lenses. Now I will refer you to Zenni for an affordable range of glasses frames to help you find the right pair. On Zenni you can upload a photo of yourself and do a virtual try-on.

Assess whether you can wear pants. Pants are a nope, even leggings and yoga pants in my case. I can wear yoga pants around the house, but I can’t even go out my front door to get the mail. However, if you pants the pants, you pants the pants, and this is well and good. Pants the pants.

I am not anti-yoga pants or leggings by any means, however, I cannot personally wear them. I do know that folx that can wear jeans should check out Maurices. They are the only jeans I can wear when the temperatures drop waaay down low. Maurices comes in a wide range of sizes, are incredibly soft, and do not press on my hips to aggravate endometriosis pain.

Do you need to wear sunglasses? A spoonie guy or gal can really have fun with this. Designer sunglasses or sunglasses that look like a million bucks for cheap off of Zenni to create an ensemble can really help create a wardrobe in and of itself.

4. What is your hair texture, and how can you live with it naturally?

I recommend going to a highly rated barber shop in your area for help in regards to this matter if you need a haircut. Curly and wavy hair can look good short in the hands of a skilled barber even if you are a female spoonie. It’s also easier to take care of. Be sure to pay attention to how they style it at the barbershop and ask questions, such as “What are drug store dupes for this product?” if and when they try to sell you a salon product. Be persistent if they try to tell you there aren’t any. Believe me, there are.

In general I am more in favor of short hair for female chronic illness warriors because it is less likely to become matted in the unfortunate event of poor hygiene. If you find yourself going a few days without a shower and aren’t getting second or third day hair, beanies and other cute hats are your friend.

For tips on how to care for your hair with a chronic illness, check out my post, The Spoonie Girl’s Guide to Personal Care. These are good tips for men and non-gender conforming as well.

Conclusion

It is possible to cultivate a personal style post diagnosis if a spoonie so wishes, but it should not be expected nor should it be prioritized. I wrote this for fun as a silly girl post, though folx not identifying as girls are welcome to use this as well.

Now, a recap:

Pocket full of starlight: You can have fun with your spoons if you so wish.

Pocket full of darkness: Fun costs spoons.

Use your spoons wisely!