What will you be thinking about during your wedding ceremony? Will it be the future you are about to start with the love of your life? Will it be how fierce you look in your dress? Will it be the cake you intend to demolish?
Well whatever it is, I hope you won't be thinking what I was: “Dear God I hope I make it to the end of this thing without wetting myself!”
Why I'm not hiding my disability at my wedding
I've often been told that I shouldn't think of myself as being disabled, that I shouldn't describe myself as a "wheelchair user," or even that... Read more
Yup, sad but true. I have had Interstitial Cystitis (IC), a chronic urinary condition since I was 20. I pretty much feel like I'm passing kidney stones every day and I'm not going to lie, at times it can make life much less fun. By the way, the ceremony passed without my feared outcome although I did have to make my customary Cinderella-dash from the scene.
It took a few years but I began to accept it as part of me and realised that chronic illness, while frustrating and painful, can be the making of you as a person. I guess having a chronic illness makes most sufferers a little offbeat. To lead fairly normal lives requires us to be adaptable and downright inventive.
We favour weird and wonderful hobbies that can be kept up even if we're out of action for months on end. There is no corner of Etsy that lurks undiscovered. We often immediately pick up on outsiders and gravitate towards them because we kind of get it (even if we don't really get it). We also grab every opportunity for happiness and fun that we can, as we never know when our conditions will worsen.
Carpe Diem is our motto. Despite my health I have moved abroad without knowing a soul, I have danced burlesque, I have flown across the world to go on a second date (reader, I married him), and I take way more risks now than I ever did before IC. My friends love it when I update the list of famous places around the world where I have peed in public without getting caught (the Circus Maximus in Rome is currently winning).
We are fabulous multi-taskers, often keeping our troubles from public view while holding down jobs (when we are able).
Chronically ill brides-to-be (or grooms) should embrace the fact that we are used to conducting life like a military operation, so the minute details of wedding planning are second nature. But we shouldn't forget to enjoy the day and the person we are committing to.
In that effort, here are my 10 tips for wedding planning with a chronic illness…
Feel comfortable in your outfit
Spoonie Bride: How to find a wedding dress when chronically ill
When it comes to planning your Spoonie wedding, it's all about the dress. If you suffer from chronic pain from a chronic illness, the dress... Read more
My first wedding purchase was my underwear, no joke. There is no point in binding yourself up in a corset if you can't breathe and it's an issue. If you get cold easily but want to show off tattoos, have a wrap or jacket on hand.
If you have stoma, go for a '50s prom dress with a full skirt. If you use a wheelchair, consult this post about finding a dress.
Your health should not be a barrier to self-expression, but you should feel at your best in what you wear.
Technology is your godsend
Camera phones can take pictures of venues, dresses, or cakes when you can't make it out and about. Sites like Etsy and Ebay allow you to be as weird and wonderful as you wish, all from the comfort of your bed.
Venue is important
Your needs come first. So if you need somewhere mobility-compatible or close to a restroom, don't get married in the wilderness. Just use common sense.
Stress watch
Stress can affect chronic conditions so if you can arrange some stress-busting the week before the wedding, whether this involves checking into the venue early (and enjoying the spa) or keeping last minute details to a minimum, it will help your body to calm itself.
Create a contingency plan for unexpected health issues
Whether it's a chair nearby, incontinence pads, medications on standby, or knowing the quickest route to hospital. Hopefully it will not be needed but it gives you peace of mind. We are normal brides with one or two special requests.
Always know where the loos are!
9 tips for a disability-friendly wedding (…especially when you're not visibly disabled)
Unless I'm moving around none of my disabilities are particularly visible. However amongst our guests we had lots of friends and relatives with health issues... Read more
Douglas Adams had a point about knowing where your towel is and the same goes for toilets. If you have Interstitial Cystitis you are probably thinking this is a no-brainer. It is never off your mind when you venture somewhere new. Most indoor venues have them but you can check via the Radar Scheme which maps toilets worldwide.
Get the hair stylist/make-up artist to come to you
This is a big help when it comes to energy conservation. And it makes you feel very important indeed!
Take a break if you need to
Your wedding guests are there because they know and love you. If you need to rest/vomit/hydrate/change a dressing or catheter, the wedding will still be there when you return.
Keep photography sessions short
We organised a separate portrait session for the following day. It was much less stressful and also meant our guests didn't have to wait around after the ceremony.
You may seem like a control freak but that's okay
You know that song “It's My Party And I'll Cry If I Want To”? That's our collective song! Even if “Prince of Darkness” by Megadeth is officially our wedding song.
Also, be sure to check out ALL of Offbeat Bride's posts about disability-friendly weddings.
Oh, gosh, does this apply to me! While I don’t have CI, I do have another bladder condition. If I’m lucky, I get 30 seconds warning when I have to pee, usually even less. Fortunately, it does not make me prone to other health problems (aside from the occasional extra UTI) so hospital concerns are not necessary.
While I did scope out the bathroom near our venue, I am so worried about the dresses I love working with my mad dashes to the restroom. I think I am literally going to schedule in bathroom breaks for myself during my wedding day.
Now I think I need to go back to the dress shop and try to play around with the dress I picked (but haven’t bought) to make sure I can go.
LOVE THIS! I have arthritis and I was worried about standing all day long. The “take a break if you need to” is, I think, the best advice and the hardest to remember. We want our guests happy, and to me that meant there couldn’t be a large gap between wedding and reception. But I also needed to go lay down, or I wasn’t going to make it through the reception. So, three hour gap it is. Your family and friends love you…if they know the three hour gap is so you can take a nap and be ready to party more, only an asshole is going to complain about it. Fantastic post!
I have several chronic illness, the major one is severe Fibromyalgia. The things I did on my wedding day to avoid making myself physically incapacitated before the end of the night was: (1) no receiving line (hugs, especially that many, are excruciating). (2) My dress was a corset. It sounds like this is counterproductive and have the opposite affect but it help me have good posture all day and hold my spine in a good position even when dancing. (3) Hydrate! This is important for even healthy people, but because of my intestinal chronic illness I couldn’t drink and had to stick to water (which was OK by me!). (4) Took plenty of pain medication before hand and during the reception. (5) Skipped the crazy light show during the dancing portion of reception to avoid over stimulating my neurological issues (and nobody cared and probably didn’t even notice). I’m sure there were even more, but it was over 2 years ago so their probably just not coming to mind at the moment. My symptoms for a few days after were exacerbated of course but if I didn’t do what I did it would’ve been much worse. It was a great day!
Ditto on the possibly helpfulness of corsets! I have chronic back problems and was worried about standing up so much – but with my longline bra and corset-laced gown, I had so much support I stood and walked around for hours with far more comfort than I expected. Honestly, I was sooo sore when I went home after decorating the day before, and sooo sore when I woke up the morning of my wedding day, I took pain medication as well (and made sure I had more with me, that I didn’t end up needing). Unfortunately my groom – who also has chronic back problems – didn’t hold up as well. Maybe I should have gotten him a corset, too!
Holly, I suffer from Fibromyalgia as well. It can be so incredibly painful at times. I’m glad you made the most of it and had a wonderful day anyways.
I’m a wedding planner now so hiring a couple of employees really helps take a lot of the burden off my shoulders. Besides, being the boss is a wonderful thing.
Thank you so much for writing this! See… issues like these are what I am most concerned with, yet so few wedding blogs will openly talk about them. It doesn’t seem very ‘bridal’ to have a malfunctioning body at a wedding, and yet here we all are! Brides with wonky bodies!
I have von Willebrand’s disease (inherited bleeding disorder) and asides from the usual bruises, I don’t anticipate any major issues (unless aunt flo comes early… in which case I will regret wearing white!)
Thanks for sharing!
I also have fibromyalgia and generally deal with it by plowing through and not letting it limit me. So for the wedding, I’m trying to learn how to accept that I can’t do everything. I can’t set up tables and chairs on Friday if I want to enjoy Saturday. I can’t spend all Saturday afternoon standing to chat if I want to enjoy the reception. Learning to listen to myself and not be ashamed to tell people that I can’t do something are my biggest challenges.
THANK YOU!! I have ulcerative colitis (UC), and while I’m finally getting back into remission, my partner and I worry about how I’ll feel on our wedding day.
I know that even if I’m in remission when I’m dress shopping, I have to be able to easily use the bathroom in ANY dress, and when we select a venue, the bathrooms have to be easily accessible (and, if the bathrooms are single-stall, there have to be other bathrooms I can get to if the bathroom is in use).
I SO hear you with only having a short period of time to get to the bathroom once you know you have to go. Worst problem ever.
Thank you SO much for this article! We had a large party last year, right after my hypermobility diagnosis, and it was so wonderful to finally be ok with sitting down when I needed to, taking the pain killers I needed, and having folks be aware and attentive to me. I felt strong and well and it really was all about knowing my limits and prioritizing what I REALLY wanted to do over trying to participate in everything. Endorphins can mask my symptoms, so it’s super important for me to have someone check in with me to force me to check in with myself.
Yeah, sometimes my body “behaves” when it “knows” it needs to. At my partner’s brother’s wedding, even though I was incredibly ill at the time, I didn’t need to use the bathroom once. As soon as we got home afterwards, I was in the bathroom off and on all night. I know that there’s a chance that my body will behave during my wedding ceremony, but I need to prepare as if it won’t.
omg I know EXACTLY what you mean. That I can feel absolutely awful before a big event (an open class at work or something) then endorphins or adrenaline will kick in, my guts will be silenced for a short time, and then as soon as the hyper-hormones subside it’s back to business as usual or worse.
I am doing the same thing… hoping my body will behave, but planning for the worst.
I also have joint hypermobility and all the fun things that go along with it (joint pain, IBS, migraine) but the one I’m worrying about most is that I bruise like a peach. Part of me really wants a short (well….knee-length) wedding dress but thinking practically I need something long to hide any bruises or attractive joint supports that I’ll be wearing on the day just to keep me upright.
What about some cute stockings/leggings or some boots? (for the bruising) Or decorate your joint supports or have some custom made to suit your theme :D!
I dont know if this might be helpful but I bruise really easily and I’m really pale (I’m sure there is no comparison but my legs are usually covered in big spots the colours of a sunset) – and I also wanted to wear a short dress. Sephora carries a Kat Von D brand concealer meant for tattoos which is super highly pigmented and designed to be pretty stable (they have a spray that makes it waterproof etc too), my plan is to combine that with thigh high skin coloured stockings (and garters, what what!) for optimal skin-tone-even legs.
That sounds fab, I’ve also been recommended Mac Body Foundation so will def be testing these out before the big day.
One thing I’m definitely doing is changing into flats straight after the ceremony. I need to wear special insoles to keep my ankles stable and not sprain/dislocate something so heels can be a big no-no for me. I’ll wear heels for the ceremony/pictures and am then immediately changing into a pair of custom hi-tops to run around in for the rest of the day and evening. Ankle support, comfort AND matches my wedding colours 😀
THIS! I have type 1 diabetes. And I have been worrying about forgetting to check my bloodsugar and find out it’s running whackadoodle by the end of the day and it wiping me out and making me not feel good.
Someone I spoke to said she knew of another type 1 diabetic that hired a nurse today just to manage her diabetes through the whole day! I think that’s genius! Consider having someone, maybe a bridesmaid, be in charge of making sure to check in and handle assisting you with medical needs. (Sometimes I just need to be reminded!)
When we had a huge party for my grandparents 65th anniversary, we had “sugar maids”. The sugar maids (myself and a cousin) made sure both grandparents checked their bloodsugar, took their pills at the right times and kept my grandpa from drinking too much beer. it let them fully enjoy the day without worrying too much about diabetes, and kept some more worrywart family members at bay. (my mom and aunt just LOVE to pester my grandparents about their health)
Sugarmaids is probably the best name for a role I have heard in my life ^_^
That is so darling; useful and caring. Poor grandad with his beer rationing!
As a futur bride and a diabetic with stage 4 kidney failure I was concerned about this issue. I actually asked one of my bridesmaids to be my caregiver for the day. We arw both caregivers for a living so I knew she would be helpful in this area. And she can help me inject my insulin too.
This is a great idea. Kudos to your friend for thinking of it! 🙂
I have a whole bunch of disabilities and medical issues, which I call “Heinz 57” and I got married almost a year ago. I planned most of the wedding myself and here are a few tips. Expect the unexpected, I had back ups in place for back ups, for example my DJ cancelled and I had an iPod with speakers which broke so one of our groomsmen had his laptop an we used that for the music. another example is the person who was supposed to help decorate forgot so I had a friend help with the decorations, well it ended up my maid of honor did the decorating because the friend had a last minute emergency. I had extra supplies with me since I have poor bladder and bowel control (I did wet myself during the ceremony, but at least I didn’t poop which is what I was more afraid of especially when I’m nervous). I had a receiving line but did not allow hugging so not to set off my nerves, the priest announced no hugging the bride due to health concerns. My maid of honor and mother-in-law made sure I ate so My blood sugars wouldn’t crash (I’m hypoglycemic). They made sure I took breaks so I wouldn’t get overwhelmed quickly. I called the party off around 10 pm because it was getting too much for me. After I left with my husband, the guests stayed to help clean up. I had planned to walk that day but had severely sprained my ankle 2 days before the wedding so I had to be in my wheelchair, since that was the case some of my family took extra pieces of material left over from making the dresses and decorated my wheelchair.
I like the ‘Heinz 57’ nickname. Sounds like you thought of everything in advance (even if a few surprises did occur on the day). I hope you still managed to enjoy yourself despite your health worries.
My husband has Crohn’s disease and some associated health conditions like anemia. He tends to get lightheaded and was terrified of passing out during the ceremony, so we lugged a bench from our garden to the ceremony site and sat for most of the ceremony. The bench is next to our front door now, and it’s nice to see it every day and remember that.
The menu was another area where we had to make accommodations; he has severe dietary restrictions, and at most events we attend he gets an Invalid’s Special from the kitchen. I wanted him to be able to get something off the buffet table at his own damn wedding, so I made sure there was one hors d’oeuvre and one main course he could eat.
And finally, we decided to take our honeymoon in a mountain resort area a two-hour drive from home. We didn’t want to do anything too taxing. We took a splashier vacation three months before the wedding, and kept the honeymoon low-key and restful.
As it happened, he was hospitalized with an obstruction five weeks before the wedding. It resolved, but then flared again a week before. It was a rough, scary night, but there was a silver lining. I’d been dreaming about my wedding day since I was a little girl and had so many expectations wrapped up in it, but after that all I wanted was for the wedding to happen. As long as he was healthy enough to be there and we were married by the end of the day, I’d consider the wedding a success. And that was a great attitude to achieve going into a week of heavy DIY-prep for the wedding of my dreams.
Of course, it’s not just chronically ill brides who get married so thank you for sharing your mission to give your husband the day he deserves. You sound very thoughtful and he’s lucky to have you. I particularly like the stress-free honeymoon idea – I got a ‘minimoon’ at the Ritz in New Orleans, just two days using the spa which was so relaxing and lovely before I had to fly home (alone) to hand in a uni essay. Great idea about the bench too – it’s odd how so many answers to health concerns at weddings end up looking charming.
Thank you so much for all the comments! It’s been a pleasure to read them and to see how you have responded to the various challenges that have occurred in the planning and on your big days.
I knew we girls (and boys) with ‘wonky bodies’ (haha) were inventive and had great initiative and it’s shown – see how that problem of the bruised legs was solved, just like that?
I do so hope that you were able to enjoy your weddings and that if you are planning, you are already starting to concoct all manner of weird and wonderful solutions to those pesky health problems. Naphtha, it’s so true that it seems almost shameful not to be perfect on your wedding day. For fuck’s sake, most of the bridal magazines seem to think having an extra inch of flesh or a hair out of place renders you ‘unbridal,’ let alone a malfunctioning body. You’re expected to be a swan, furiously paddling underneath that dress, but the chronically ill are paddling every day so no wonder we need to lie down!
I just wish you and you bodies the best of luck, not just on your wedding days, but in the years to come too.
Thank you so much for this article. I have type 1 diabetes too like Erin, and am terrified of having a low blood sugar halfway through the vows or another important part of the day. I plan to have a designated bridesmaid to discreetly remind me to check my sugars and carry some snackage “just in case”. I also have asthma, stress-induced IBS (how convenient…) and Minimal Change Glomerulonephritis which in combination leaves me physically and mentally exhausted a lot of the time, so have been worried about how I’ll handle such a “big day” but your article has reassured me. It’s our day, and I need to look after myself to get the most out of it. 99% of the guests will understand if I’m too tired to mingle and would much rather rest up with a diet coke.
Lexie, I loved your theory on why those of us who are “chronically awesome” often have Offbeat weddings. Sounds like our wedding to a T – I’ll be celebrating the fact I’m there and having a ball (as much as I’m able to!) The grandparents will have fits over the “unique” aspects, but I’ll be smiling every step down the aisle 🙂
Good for you! I hope you have a fantastic day and that there’s a photographer on hand to capture your grandfolks’ faces haha 😉 – I’m sure they’ll be proud of you.
I love seeing this kind of stuff. I wonder sometimes how I’ll manage, because I have fibromyalgia, epilepsy, and a heart condition as well. I’m not even engaged yet, but I just wanted to share how awesome OBB is for talking about these kinds of issues. Oh, and to get ideas for the future.
One thing I would add is that if you have a Chronic Illness which requires timed medication, incorporate it into your timeline and make sure some people set it on their phones! Missing medications can cause complications for certain CIs and it’d be really crappy to get sick because you were having such a great time you forgot to take your meds in a timely fashion.
Other than that, SO VERY AWESOME! Thank you for this!
Thank you for posting this. I haven’t commented yet on an OB post but I felt that I had to for this one. I have something that has all of the symptoms of IC except the painful peeing part (doctors have been less than helpful along with any meds they’ve tried). Sorry if this is TMI!
My fiance and friends are used to my constant need to use the bathroom and need to know where every bathroom is no matter where I go, but it is still embarrassing for me. I have avoided situations because there was no bathroom and concerts/races/long car rides make me nervous. The church where we’re getting married at has just one stall, and the venue has three stalls in the ladies room. It kind of stresses me out.
So thank you for this. It’s my day and I’ll take as many breaks as I need to.
Are you me? I joke with my friends that I am a public restroom connoisseur, and I don’t go places where I can’t poop in private. (My bathroom problem is IBS.) Note, private is all I even really care about anymore. I’ve had so many desperate times, and I love to travel, “Oh, the Places You’ll Go” has a VERY DIFFERENT MEANING to me. ;D
But yeah, camping and music festivals and long car trips are basically a “nope.” In fact the fiance and I are spending some time visiting family in the days after the wedding (we live abroad, we’re always honeymooning haha) and they offered to drive us from the city of the wedding to where they live.
A five hour trip.
He was so great about it, I only had to give him a LOOK basically and he was like “no thanks, we’ll enjoy some quality scenic newlywed time and take the train [that has bathrooms]”
My wedding actually ended up fine with the crazy bladder. The reception site had a handicapped stall that fit my dress. Also, because of getting motion sick in the limo (that was the worst-blegh), my dress was loosened enough that I could flip the back up and actually sit to use the bathroom. Things worked out awesomely (aside from the limo of course lol but that was literally the only snafu all day)
This was a huge concern for me when we were planning our wedding. I have hemiplegic migraines and am on permanent disability, so not constantly stressing about money was a huge one for me. I also made sure I had a cane that would match my wedding outfit (and be high enough to handle my shoes) in case I had an attack. Meds were prepared and hauled around by my mum, and I made sure the week before the wedding went how I needed it to. Stress is a huge factor in HM, as it is in so many chronic illnesses, so I needed to keep it as under control as possible. Everything went smoothly and without incident, but knowing that I had those back ups in place really helped. This is a great article, and a great list!
I just gotta give you mad props for that Jane Eyre quote. Mr. Rochester 4 eva! Holla!
Love this post! I’m a spoonie myself, just battling chronic asthma and ncgs.
To make the day safe for me, we made sure to have an indoor wedding and reception (no allergens or smoke, woot!). Also, I asked the few family members that did smoke to refrain from doing so on my wedding day. Nothing against smokers, just it triggers incredibly bad asthma attacks for me usually landing me in the hospital. Luckily, they understood and didn’t smoke until after my hubby and I left.
As for the NCGS and my 10 food allergens, we purchased meal ingredients and had a family friend (that was trained in cross contamination avoidance) cook the food for us. That way, I knew it was completely safe without any worries.
Lastly, I recommend that all spoonies out there need to take time to rest and relax while planning. Stress just makes any disease flare-up continue on for the worst, so taking downtime to relax a bit each day is beyond beneficial. <3
Btw, here's a quick link which explains the spoonie subculture very well. It's basically any person with a disease or chronic illness.
http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/
Thank you so much for this thoughtful post.
I was diagnosed with U.C./Crohn’s (they couldn’t definitively decide which) at 21. Rather than years of flaring, however, my body went into a medical crisis and my large intestine in its entirety was removed over christmas 2007. Lived with the stoma/bag for 11 months before I was approved for j-pouch construction, and it’s been a slow climb up the mountain of remission ever since.
My FH Josh has been instrumental in my recovery. Incontinence and severe cramping/pains had me couch-bound much of the time, and barely brave enough to go on walks let alone venture out for real life-living. With his consistent understanding and cheer-leading though we have had many beautiful vacations, hiking mountains across the north eastern u.s. We are getting married in September and I feel 85% confident in my ability to have a totally manageable day.
Stress, food, and timing are all major concerns in my success/ remission from flares, but it’s so good to know that there are other brides out there who really do have to plan every detail like me. I keep joking that I’m going to eat nothing but rice (my safety food) the week before the wedding. I even timed my period to fall a week before the wedding as that severely upsets my digestion.
Shout out to all the other chronically offbeat ladies out there. So much love for this thread.
No matter what happens on your day, your partner will be by your side. That’s the greatest gift.
<3
Oh, you poor thing. Boy can I relate (last year wasn’t very good and I’m still recovering). I hope you have a wonderful wedding day (sounds like the marriage bit will take care of itself).
CRPS here, along with asthma and apparently the new fun bag of ideopathic urticaria and angioedema (I swell a lot). “Thankfully,” I’ve had the CRPS long enough that living with it is second nature, but it’s a great idea to highlight the need to make sure to stop and think about things – like making sure I have a shawl to match my dress, and that any and all food, scents, etc, are tried out well in advance of wedding day fun. (The big one? Convincing everyone else to not only not wear scents, or scented soaps, but also to wash their clothes with Don’t Kill Me detergents if they want to be more than arm’s distance from me.)
I have GAD and IBS. A winning combination to say the least. (They feed each other so perfectly it’s practically illness art.) Off to the side is also my allergy to sunlight.
This post makes me so happy, this has been a big consideration at every stage, especially with all the stress we have already, traveling back to our home country and everything.
It’s nice to know I’m not the only one out there making sure I’ve always got a bathroom nearby and a cup of tea at the ready and a place I can duck out to when I need a rest. I’ve incorporated parasols into the ceremony in place of bouquets, not just because they’re awesome (they are) but for better shade. (I HAD to find a way to make outdoors work, so parasols at sunset it is.)
I’ve literally scheduled out doses of sedatives, anti-emetics, and anti-inflammatories for the course of the day such that when certain things make me drowsy I will be able to nap without being noticed.
I’ve sacrificed certain things to improve my odds of success – I got a reception dress that is more comfortable than my elaborate corseted ceremony gown – so that I can have my cake and eat it too on the looks front.
I’ve basically decided not to even TRY to drink alcohol, and since my stomach will probably be too messed up to eat much of our awesome food, I’ve got the caterer agreeing to pack up enough of everything that I can really enjoy my dinner at midnight in the comfort of my hotel room.
Making this work is going to be tricky. But I feel like I’m in good company with other brides who have these kinds of considerations too.
THANK YOU! I have IC too, I’ve been diagnosed since I was 19 and I’m 28 now and by damn was this relevant to my interest. My reception is September 15 and the only accommodation I’ve thought of making is putting our head table with a clear path to the ladies’ room.
I have fibromyalgia/ME (doctors just shrug now when I ask which one) but THEY DON’T HAVE ME!!!
I’m so grateful for this post because some of it is so relevant to me and I totally hadn’t thought of it amongst all of the excitement. I know I’m going to find it very hard to say that I need a break because I don’t want to disappoint people so my bridesmaids are going to be tasked with dragging me from the reception when I start to go pale green (hopefully before).
I’m also wearing platform boots because I want to be tall but can’t wear heels for more than 5mins without crying in agony and I’m hoping to be able to find a cane that matches my outfit/theme or is just a bit posher than my normal one.
Now if only I could find a way of having a big-white-wedding-dress, hair and makeup that don’t get ruined by a nap and I’ll be golden!
Two things got me through my wedding…my fiance (now wonderful husband) who married me “in sickness” and my mother, who planned and executed every detail perfectly. Took our pictures with me seated…I picked cute slippers that I wore down the aisle and had Mom on one side and Dad on the other to walk me down. All the guests knew I was ill and were wonderful. The best day of my life, beginning life with the most wonderful man in the world!
This was a good article. I have Lupus and unfortunately one of the triggers for a flare is stress. As we all know, weddings = stress. Even though it is the happiest day of my life, I know I am going to be excessively tired and achy; fatigue is my constant companion. I am going to push through it though because it is MY day and Lupus will not take it from me.
Right on Lupus Warrior! I also suffer from SLE. We chose a Fall wedding (no hot summer days for this girl) and thankfully my honey hates the sweltering heat as much as I do, so that was a win-win. Also chose to have the ceremony in doors and the reception at a hotel (so I can take a rest at any point of the evening). Sometimes having a chronic condition can help narrow down your wedding choices, I.e. Making planning a little easier. Don’t ever forget, You are chronically awesome!
I’ve had a chronic illness all of my life, and knowing any trip, dance, kiss, could be my last had kept me going for 32 years, 18 longer than projected. Thank you DO MUCH for this article; it’s so important to me to have this day, but have it for US, our way. Thank you for the inspiration!
Shout out to the offbeat grooms with CIs out there!
My fiance is recovering from bowel cancer. He had a huge chunk of his large intestine removed and although he now doesn’t have a stoma, he did for almost 2 years while undergoing treatment. This means that whilst he has regained control of his bowels, he often gets little warning before needing to go to the toilet and has to eat small portions fairly regularly or else he gets shaky (something to do with the food having a shorter distance to travel and the body having less time to extract all the nutrients it needs from food). One of the side effects of his treatment is that some days he wakes up and feels like crap – like he’s still on chemo, with no energy. No one can predict when he’ll have a bad day, only that the bad days’ll occur less frequently over time. He’s also suffered from focal migraines since childhood that can come on with no warning – if they’re bad enough he has to inject himself with a painkiller that knocks him unconscious for several hours. He’s absolutely fine (provided he eats regularly) 90% of the time, but he’s been terrified that that he’ll either a)forget to eat before the ceremony and get the shakes, b)wake up feeling awful and find it difficult to have enough energy to stand up for any length of time, c)need to run to the loo halfway through the vows or d) get a shitty migraine and not be able to stay for the whole day. I’ve just sat him down and made him read this article and all your comments, and he seems relieved. We’ll have our wedding how we need it to be and it will not affect our marriage if we have to pause the proceedings for ten minutes or if he has to bow out gracefully before the disco. I also love the idea of a “sugarmaid” and am going to ask the best man to keep a couple of snacks to hand in case my fiance gets shaky at all! Thanks for all the positive affirming comments that have just relieved us so much!!
Nice article. I’m stressing out about my wedding as I have a rare condition called Aquagenic Urticaria which basically means any liquid on my skin brings me out in a painful, burning, itchy rash. Anyone got any advice for this?
Wow, it’s so awesome to see all these stories about brides with chronic illness – it makes me feel so much less alone! Fortunately my illness is such that the worst is yet to come (dun dun DUN) but I definitely still felt like I had to plan for it – when standing for twenty minutes can cause me enough back pain to cry, it was *really* helpful to put time limits on the ceremony and insist on a comfortable dress and low heels. Not to mention, while my health problems don’t involved mad dashes to the restroom, my elderly grandfather’s do – and we made sure that they came early and were seated close to the door nearest the restroom with some bushes even closer by in case getting all the way to the restroom wasn’t going to happen. As far as I know, none of those precautions even mattered, but I’m glad we thought of it, and I definitely think it’s important to consider it not only for the bride, but for any guests that may have health concerns.
In all seriousness, though, thank you so much for this article! I really, really love that we can bring all of our personalities and selves into our weddings, and sometimes that includes our health (or maybe lack thereof). It’s become a big part of me, and I think in the end I’m glad it happened the way it did, even if I feel really, really bad for marrying someone who will have to wring his hands in an operating room observation deck one day.
I found out that I have fibromyalgia the January before my June wedding. I had been dealing with knee pain since the previous March, which is what my doctor suspects triggered the fibro. I was devastated. I did so much research, and struggled to come to grips with it while I finished my wedding planning.
Before the fibro diagnosis and knee injury, I had been diagnosed with plantar fasciitis in both feet (so bad that the podiatrist was astounded that I was even walking). I thought it had cleared, but then I started working retail again to help with wedding financing. OMG, nope, the p.f. was still there… luckily, it wasn’t as bad as before, but it was still there :'(
I began to learn my fibro, and realized that after a long day at work, all of my nerves felt like they were on fire if my feet hurt. Dammit.
So, my wedding day was rushing towards me and I was realizing I had chronic plantar fasciitis that would trigger my worst fibromyalgia symptoms. Well, damn. I decided I was going to have the best and most kickass wedding day I could anyway. I got shoes that ended up being incredibly comfortable (thankfully) and a semi-traditional wedding dress. The corset in it really helped with my chronic back pain (which I’ve had since I was 14, so I was used to it), and my shoes kept my feet comfortable.
I didn’t go to bed until 2am the night before my wedding, which I needed to be up at 5:30am for. But, I was so excited, I didn’t have any fibro pain the whole day. I almost passed out from getting too hot and dehydrated during photos, but I didn’t and everything went incredibly well! The next day, when I woke up for the day-after picnic, I woke up uncomfortable, but decided to power thru the picnic too. I had a spectacular weekend.
Unfortunately, my fibro kept me mostly out of commission for the rest of the week, but I think it was worth it! If I had had more time to learn my fibro, I think I would have been a lot happier during the weekend and the week after.
I have Lupus and I am terrified that I am going to be washed out by the time the reception gets there. Stress wears me down quickly and causes me to go into a flare. I am really hoping that I am able to keep up at this wedding. And I am so in agreement on the corset being supportive of the back. I have a lot of hip pain that radiates into my back due to the inflammation. I love Spanx for this reason. It puts just enough pressure on your back and hips to keep that discomfort at bay.
This is JUST what I needed to read! My fiancé and I are both chronically ill (we joke that together we’re one whole, healthy person lol) and have been worrying about getting through our day. Great advice!
Thank you so much for posting this! I am just beginning to plan my wedding, and I never would have thought about this(or at least, not admitted to giving it any thought). I am a disabled Army vet with a double hip injury. I don’t usually appear thus, until I start walking; most days I have a pretty bad limp, and sometimes I need a cane. I don’t like to admit being in pain or having difficulty moving, so on the days I am fortunate enough to not need my cane, I tend to push it a bit too far. I really don’t want my wedding day spoiled by my severe pain, but the idea of hobbling down the aisle with a cane is enough to make me cringe also. It is so nice to know I am not the only bride to be with physical difficulties. 🙂 I will definitely be taking a few ques from this article.
This is awesome! Thank you so much for posting it. I have fibro and was wondering about how to plan and execute a wedding. Was going to do as much of it myself as i could but maybe now i will have a coordinator of sorts to help, especially on the day.
It’s so refreshing to see an article about wedding planning that recognises the fact that some brides plan weddings whilst dealing with chronic illness! Sometimes I feel like I’m mad to be even attempting to do this but this article has really reassured me that I’m not the only one in this situation and that other people with chronic illnesses have successfully organised weddings too so thank you! 🙂
Oh, and as someone with UC, I completely get where you’re coming from on the toilet front!
Thank you for this!! I also have IC and it absolutely adds a layer to the planning for the wedding. It was so validating to come across not just an article for spoonies, but by a woman with the same disease as me!!!