2 Traditionally Bridal Things I Didn’t Care About As A Chronically Ill Bride

Bride with sequin shoes. sign overlay 2 Traditionally Bridal Things I didn't care about as a chronically ill bride spoonielifestyle.com

When I was engaged to my husband, I was in the process of being diagnosed with lupus and fibromyalgia. During what should have been my time of joy, I was ridiculously sick. Therefore my wedding, although I tended to it the best I could, did not have all the typical girl-things most brides obsess about.

To most women, your wedding day is your most beautiful day – and that means your physical self. I had some radical self-acceptance when it came to my appearance. There were just some things I couldn’t control, some things I had no energy to control, and some things I knew would pain me to control to the point where the gain wasn’t worth the cost.

I wondered if other chronically ill brides had similar experiences, so I wrote this short listicle.

1. Losing weight

At the time I was a vegan, swimming for 2 hours each day, and doing 45 minutes of yoga. By the time the month of my wedding had rolled around I had astronomically gained weight from pain meds. I was also bed bound and couldn’t walk like I used to. When you’ve gone from standing unassisted to needing a cane, you’re gonna nope out of doing crash dieting, binging, and sacrificing your hate-selfies to the weight loss gods. I bought WalMart spandex to get into my dress and got on with my life.

After the wedding, almost immediately after the honeymoon, I was also diagnosed with hypothyroidism after about six months of looking for it. Chuckee darn, y’all, I could’ve guessed that!

Now Pinterest and any other god awful website (I’m looking at you, Instagram) shows me body shaming, hateful things that I wish I knew how to tell the website to block, because back when I was thin I didn’t have these problems. I wonder if it’s looking at me through the camera and going, “Oh, look, a fat girl. We have to make her hate herself so she’ll use the site more.” Kinda like the time Pinterest kept sending me suicide notes while I was starting therapy. Who writes these algorithms? Yeah, I don’t know either. I only use Pinterest to pin Chronic Illness Business stuff.

In all, I gave up on sweating for the wedding, because I couldn’t move. I don’t regret it. During the time I still had a gentle yoga workout regimen, but the cards weren’t in my hands.

2. Having perfect skin

I was super stressed out and so sick I couldn’t communicate to my doctors I didn’t deem essential. For my doctors I deemed essential, such as my rheumatologist and neurologist, I would create PowerPoints on my tablet. When it came time to talk, I would pass the tablet over to them. So when it came time to see the derm, I didn’t create one. I figured he’d look at my skin and be done with it.

Unfortunately I was expected to talk at the derm, and I was not coherent due to the pain I was in. I remember the smirk on the doctor’s face. Not to mention when I was prescribed an acne cream, I couldn’t remember to use it due to brain fog and constantly being on the go with doctor’s appointments sometimes at 8AM. I lived 45 minutes out from the city.

During this time, I was also watched for developing a lupus rash, which the derm didn’t seem to understand, and proceeded to tell me what allergy shots were and how they worked like I was in 5th grade.

Are you a fellow spoonie bride?

Don’t worry. You’re still going to be beautiful whether you labored over your appearance for months or years or not. You should be yourself on your wedding day. Whatever form that is, just is. Nobody owes the world a physical beauty that is strictly theirs to keep, not even on their wedding day. Sometimes we are all forced to be who we are. If you fall in that boat, don’t worry.

Conducting Research: THE DISABILITY-FRIENDLY WEDDING PLANNER

The whole point of The Differently Abled Bride Guide is to help people. I want to help people by letting them know they are not alone, provide practical advice and inspiration, and ultimately show the world we exist. We are here, we are loved, and need to be treated fairly.

While I’ve been promoting and asking for research for grooms, a kind fellow member of the Chronic Illness Network informed me that Differently Abled is a slur. When I was in University, before I became disabled, I learned that Differently Abled was how to refer to a disabled person.

I admit that I grapple with the term disabled, as I assume many do, which led to the original title of the book. Usually I rejected the term because of able-bodied friends throwing shade at me or they could not believe that the high achieving, hyperactive, goal-oriented girl who wanted to save the world couldn’t go to the grocery store without a mobility aid because…. she had some Whiner McBabypants fake disease like fibromyalgia. People with fibromyalgia weren’t “supposed to have this problem.” I had something else, it was my husband, I should be a better vegan… You know, I’m sure, if you’re reading this, how it goes.

Honestly I wanted to be able to catch those with invisible disabilities who didn’t have the image of disabled in their heads in this book as they are covered as well. The book also covers wheelchair users, paraplegia, the blind, the Deaf, and other classically-thought-of nomenclatures of disability.

The project is renamed The Disability-Friendly Wedding Planner and will cover brides, grooms, and non-binary folx who are disabled. I need people to interview, so please consider contributing to the project.

If you would like to help my project, email me or comment on this blog.

BIG Project Reveal: The Differently Abled Bride Guide

Those of you that follow this blog closely know that I have been hinting at something big. Something huge that I’ve undertaken, a research project that I hope will change the world.

It’s called The Differently Abled Bride Guide.

I came up with The Differently Abled Bride Guide after mourning my own wedding planning experience and still grieving my diagnoses. What I wanted to do was use these two strange experiences to help other women.

In the media, the female disabled body is never portrayed, and when if it is, it is pitiful or evil. There is a lack of understanding from the outside in, and ultimately a lack of representation. More specifically, there is absolutely ZERO representation of disabled women in the bridal industry.

I decided I would write a book about this phenomenon. I’m almost there. All I’m doing is waiting for permission from the people I need it from and to get in contact with an editor.

This book I intend to go the traditionally published route after I was inspired by friends and professional book people in my circle to do so. I had originally planned a KDP book, but after I shared the idea in real life and was met with high praise, I decided to learn how traditional publishing works. As a result I am now a member of my state’s premier literary society.

It’s been a wild ride, and if you’re interested in learning more or helping out with the research, you can email me.

As always, I designed an amateur book cover using a commissioned watercolor used in the book by redlittleberry who, authors, if you need illustrations is fabulous. My book covers are always meant to be motivational for myself. I think these 4 book covers turned out pretty well. However, I could use a little sensitivity. What do you think? Offensive?
The last thing I want to do is hurt someone, so please give me feedback. Note: this book is an all-inclusive look at people with chronic illnesses and varying abilities.

Real Spoonie Weddings: Interview With Study in Fitness’ Jess! hypermobile Ehlers-Danlos Syndrome

Jess was kind enough to go over her heartwarming wedding experience with me today. During these troubling times I know it’s hard to carve out space for collaboration, so I am doubly thankful for her getting back to me with my standard 8 questions.

I am hoping the Spoonie Bride Project will be a great collaborative project where all of us Spoonie gals come together for a bigger goal: turning the bridal industry upside-down. After joining the Chronic Illness Bloggers Network, I am thankful for the ability to connect with other bloggers trying to make a difference – most in more nobler ways than I do – and putting me in communication to better realize my loftier goals.

So, thank you, Jess, let’s get on with the interview. Check out her blog please and thank you!

Question #2 was omitted per request.

Q1. Tell me everything there is to know about your condition & how it specifically relates to you.

I have hypermobile Ehlers-Danlos Syndrome. For me, it means that I manage a lot of leg, hip, and neck pain and my ribs and vertebrae subluxate frequently (less frequently after a year of physical therapy!). I’m fortunate in that I don’t dislocate at all and have done enough strength training that I do not require bracing of any joints. My hEDS really affects my gut, which affects my skin a lot, so I am constantly watching my diet to avoid trigger foods that could cause gut issues and acne/eczema. Stress management is crucial for me too because any stressors (good or bad) will trigger pain, gut and skin flares.

Q.3 What was your venue, how many did you look at, and what factors did you consider in looking at a venue? 

Our backyard was our venue. I looked at probably 5 other venues but they were all so expensive and many of them had minimum guest requirements. We never wanted a very big wedding and even inviting everyone we would have liked to have there, we wouldn’t have met the minimums. Plus when we realized that the venue money would be better spent doing a lot of the landscaping we already wanted to do to our backyard, we decided that was the way to go. And the whole stress of planning a wedding at an actual venue was too much for me.

Q.4 Did you require any special catering? 

We took our wedding party out to dinner at our favorite local New Mexican restaurant. I was able to special order my food so I could (sort of) stay in compliance with my elimination diet, but I didn’t make too many dietary concessions because I just wanted to enjoy my wedding dinner! I paid for it a little over the next few days, but not too bad.

Q.5 Did you have any symptoms on your wedding day? If so, how did you manage?

I was still having some head cold symptoms and a fair amount of fatigue but didn’t have any gut, skin, or pain flares thank goodness! Everyone was really helpful and all I had to do was ask for help if I needed it. We had already communicated well with everyone about how we wanted to keep things relaxed and enjoyable and everyone really stepped up to make that happen.

Q. 6 How big was your guest list and wedding party? 

We had 9 people total, not including my husband and I. And we didn’t really define a wedding party.

Q. 7 What was your dress like, where did you find it, and was it a certain way to accommodate you? 

I got my wedding dress from JuneBridals.com. It was the only place I could find the wedding dress I wanted – none of the bridal stores in town had the bohemian/fairy tale style I wanted, or if they had it, it was WAY too expensive. I found a beautiful dress that I love for $200 from JuneBridals.com. It didn’t fit perfectly (even though I put in my measurements prior to placing the order), but it worked out really well. My mom had to modify it a little in the shoulders to make it fit a bit better – I have very slight shoulders which makes it hard to find dresses that fit anyway. Not sure if that’s from the hEDS or just my skeleton!

Q. 8 What are 3 things you would like a wedding vendor to know?

I would love wedding vendors to know how to work with a couple to create a calm, small, intimate ceremony. I didn’t get the impression that I could have that with any of the vendors we looked at. There were too many details, the guest minimums were huge and it all felt too commercialized. 

So I guess the 3 things I’d like vendors to know is that not all brides want everything 1. overanalyzed and over-planned, 2. HUGE, and 3. Commercial. I just wanted a beautiful space where someone else took care of the decorations, and I could show up in my pretty dress, commit my vows to my husband, and then kick back and enjoy celebrating with a small group of people whom I love.

See previous Real Spoonie Weddings here.

Want to be a part of the Spoonie Bride Project?

Find me on twitter @MOShea00660361 or email me at spoonielifestyle@gmail.com.

5 Most Comfortable Wedding Shoes for Brides With Chronic Pain (Or Anyone)

My wedding shoes, the Adrianna Papell kitten heels to be reviewed below.
Disclosure: Bear in mind that some of the links in this post are affiliate links and if you go through them to make a purchase I will earn a commission. Keep in mind that I link these companies and their products because of their quality and not because of the commission I receive from your purchases. The decision is yours, and whether or not you decide to buy something is completely up to you.

Are you planning a wedding? Congratulations! Are you planning a wedding and have chronic pain? Congratulations! I was there a few short months ago – 2 days short of 3 months – and still suffer from the Postwedding Blues. The Postwedding Blues is a mix of anxiety and depression some brides experience after planning their wedding and walking down the aisle. I’ve got it bad. I still look at wedding dresses, write wedding articles for websites (to hopefully come out soon), and do my research. Then of course, there is the personal component of this blog. Much of my wedding advice for chronically ill brides comes from my own nightmare of a wedding planning experience. This is some solid, tested advice you can trust because I’ve been there.

Why write about comfort shoes?

The shoe is the most important part of your day followed by the dress because of comfort. If your feet aren’t walking on clouds, then you will be in excruciating pain. I tried to wear Adrianna Papell kitten heels for my ceremony and went total bridezilla by the time the reception rolled around because I was in so much pain.

My first suggestion for brides with chronic pain? Don’t even think about kitten heels!

This list is in descending order, with the best, or most comfortable, being first, to least comfortable, being last.

1.Crocs Women’s Flat Sandal in Oyster

I’ll say it. I wore Crocs at my indoor wedding in December. Yes. White dress Crocs. These. I came out in my kitten heels because I was too embarrassed to with my guests, but you know what? No one could tell when I changed into these! These were by far the most comfortable shoes I tried.

My Pick: Crocs Women’s Flat Sandal in Oyster

2.Converse Unisex Chuck Taylor Perforated Stars High Top Sneaker

Everyone knows the popularity of Converse in weddings. It’s more than about hipsters – they’re comfortable for your big day! These converse are extremely bridal and almost look lace-like with perforated stars. Delicate and a little rock-and-roll, the best of both worlds for a bride with chronic illness.

My Pick: Converse Unisex Chuck Taylor Perforated Stars High Top Sneaker

3.Converse Women’s Chuck Taylor All Star Sparkle Trim Low Top Sneaker

A dressed-down, lower profile version of the shoe above, these Converse Chuck Taylors are great for brides with edemas or swelling. A high top shoe can make it difficult to get your foot out of the wedding shoe if your legs and feet are swollen.

My Pick: Converse Women’s Chuck Taylor All Star Sparkle Trim Low Top Sneaker

4.Converse Unisex Chuck Taylor Hi Top Sneaker

This one’s my favorite shoe of all time, my dream shoe, the shoe that would have been my wedding shoe if I could have found it in time. This shoe, this beautiful, comfy shoe, is for my LGBTQ+ brides and grooms, my chronic illness brides who love rainbows all over the spectrum, and brides who want a little color under their dress. You just want to have color and love comfort for this to be your wedding shoe.

My pick: Converse Unisex Chuck Taylor Hi Top Sneaker

5.Adrianna Papell Women’s Tonya Ballet Flat

When it comes to wedding shoes, brides love Adrianna Papell because of her delicate, fairytale designs. She even has Cinderella-like shoes to go with her theme. However, when you suffer from chronic pain, I don’t recommend harsh, firm plastic to encapsulate your feet in for a day. There is only one shoe by Adrianna Papell that I can recommend for a bride with chronic pain, and it is this one. It only covers your toe and heel, giving room for foot swelling, and is flat, allowing yourself to be free of the pain any kind of heel gives you, the bride.

My Pick: Adrianna Papell Women’s Tonya Ballet Flat

Don’t put yourself through any kind of pain just to be pretty for one day of your life! It’s better to enjoy it!