A slightly serious and somewhat humorous guide to planning a "normal-looking" ME/CFS-friendly wedding, from the perspective of a caregiver bride, Casey E.
Congratulations, you’re engaged!
It probably took you a long time to get here. I’m so excited for you! I imagine it’s been quite the journey so far! I’m so happy for you and your PwME (Person with Myalgic Encephalomyelitis) as you plan your wedding and future together!
First of all, get rid of your expectations of what your wedding should look like. Your wedding will be beautiful, memorable, and fun, but you might need to forgo traditions or activities that you’ve seen at other weddings. Your wedding will not be ordinary. It will be amazing, and very unique to fit your needs!
Like one family member told us, “You’re risking SO much to just experience a few hours where you can feel ‘normal’.”. I hope your experience won’t be overwhelming, and that you can look back on those “normal-like” hours with joy!
Wedding planning is hard enough under normal circumstances for healthy couples. And if you're reading this, chances are that you are not dealing with good health or normal circumstances. Every PwME has different needs, so many of your wedding plans may look totally different from the ideas listed here, so weigh all your risks carefully when planning.
Some things you will probably need include:
Lots of time. Which you probably don’t or won’t have.
A Wedding Coordinator. Expensive, but oh so helpful! Bonus if your venue offers a coordinator included with the price of your venue!
An all-inclusive venue. Again, expensive. But I thanked my past-self when I didn't have to call and pay 4,983 vendors separately.
A Backup Plan.
Another Backup Plan.
A Backup Plan for the Backup Plan of your Backup Plan.
Several more Backup Plans. (At one point, I was planning three different weddings because my fiance’s health flared at the last minute and we almost had to change venues. So, have your pockets full of backup plans!)
Approximately 1,500 metric tons of patience & flexibility.
A good cry. Or several. (Probably several.)
My (now) husband suffers from severe ME/CFS symptoms; he experiences constant debilitating fatigue and pain, forcing him to remain bedbound or reclined most days. It's difficult for him to speak, eat, or be exposed to sensory stimuli. Since he's too ill to do most daily tasks required to live an independent life, I've been his full-time caregiver for the past several years.
Even though we rigorously practice "pacing", my husband still suffers from frequent "crashes" where his symptoms flare for hours, days, weeks, or longer. After he proposed to me, for example, his health crashed for 8 months until he returned to his normal "health baseline". This left us less than 4 months to plan the wedding, which was doable but very stressful! If you are able, I recommend giving yourself a longer timeline to plan your wedding!
We knew the wedding would be a huge risk for my PwME's health and baseline, so here are a few things we did to make our wedding ME/CFS-friendly!
Small Guestlist This was so difficult. We both wanted to invite so many people to our wedding! Social interactions cause my PwME to crash, so unfortunately a small wedding was necessary. We tried to livestream the wedding for those who couldn't attend in person (but we had technical difficulties), and we sent the recording to our absent friends & family afterwards.
All-Inclusive Venue & Wedding Coordinator It was expensive, but worth it for us. The venue was handicap-accessible and a short drive from home. The venue and coordinator arranged all the food, decorations, set up, clean up, and day-of scheduling. Make sure you read all the contracts VERY carefully to make sure you won't lose non-refundable deposits if your PwME crashes right before the wedding. We seriously pondered having the wedding on my fiance's back porch, but the amount of set-up/clean-up would have been too intense for us. Do what works best for you! You might have to get a little creative to find a venue that fits your needs, like a nearby park, a friend's backyard, an Airbnb, a rec center, a backroom of a local restaurant or bakery, a winery, a golf club, botanical garden, historic house, or a Zoom call!
Child-Free Wedding My PwME is noise-sensitive, so the sound of squealing children would have wrecked him. This was such a hard thing to ask and enforce, especially since we have so many adorable nephews and nieces we wanted to invite!
Germ-Free Wedding We obviously didn't want my immunocompromised PwME to get exposed to germs, so we had to be very strict about asking sick guests to stay home. This was heart- wrenching because several family members and one of my bridesmaids had to cancel at the last minute due to unexpected illness.
Finger Foods (instead of a full meal) With my PwME's noise sensitivity, clattering silverware and clinking plates from a full meal would have caused his health to crash. Since he also suffers from tremors, handheld foods were better for him than using silverware. Our venue didn't allow us to bring outside food onto their property, which was a shame because grocery store food would have been much more affordable than the food offered by our venue.
Vitamin Infusions We talked to medical professionals to see what nutrients and supplements would boost my fiance's energy leading up to the wedding. They suggested a series of IV injections and infusions with increasing doses of ANA, B-12, and Glutathione. Unfortunately, these can get quite expensive & they weren't covered by our insurance, and it was hard to tell if they helped much.
Mobility Aids and Seating My PwME relied on his cane and reclining wheelchair during the wedding. I also asked the venue to place cute chairs at the altar where my fiance and I could sit during the ceremony. If you tour venues in advance without your PwME, I'd recommend bringing their mobility aids to make sure potential venues are easy to navigate.
Marriage License & Paperwork Nothing says “romantic” like paperwork! If your PwME is housebound or bedbound, you’re in for even more romantic paperwork than many normal couples get to experience! Lucky you! Make sure you call your County Clerk (several times) to explain your situation and ask what paperwork you will need to acquire in advance (like a doctor's note, notarized paperwork, etc.). Also look into Marriage Certificates as they may be easier to acquire than a license!
Emergency Bag I packed a bag of "emergency supplies" for my PwME that included items to help him with pain and sensory overloads. Things like: medications, pain relievers, magnesium lotion, Icy Hot, snacks (nuts, granola bars, jerky), water, eye mask, ear protection, sunglasses, eyedrops, Chap Stick, his Shakti acupressure mat, and his CPAP machine. I gave this bag to his groomsmen, along with a list of emergency contacts, in case the groom started crashing. Pack what makes sense for your PwME!
Flexibility Our wedding plans changed constantly due to the unpredictability of ME/CFS. I was very upfront with the venue and vendors about my PwME's health, and they were able to change our contracts when my PwME crashed a couple of weeks before the wedding. At one point, I was simultaneously planning 3 weddings (one at the venue, one at a friend's church, and one in the living room) because we had no idea if my PwME would recover by the wedding date. Remember: it's about the marriage and your PwME's health, not just the wedding; anything that goes wrong will (hopefully!) be a funny story for later!
Don't Compare Your Wedding to Other "Normal" Weddings. Your wedding is not like other weddings. Normal, healthy couples don't need to worry about crashes, sensory sensitivities, pacing, or mobility aids, and I'm so sorry that you do. Don't expect that your wedding will look like a dreamy Pinterest wedding; it will be a beautiful and unique celebration of your love, and that's all that matters! If there's a tradition that your family insists you must do, but you know it will add risk for your PwME, either simplify the tradition or abandon it altogether. For example, my PwME and I didn't have a rehearsal, a "first look", a bouquet/garter toss, first dance, or bachelor/bachelorette parties. We barely got to visit with our family and friends (most of whom traveled for hours to be at our wedding). We simply had a short ceremony, a brief photography session, and cocktail snacks. And it was lovely. Reasonably adjust your expectations, and find things you CAN do that will make you both happy!
Rest, rest, rest. This goes without saying, but make sure your PwME gets as much uninterrupted rest as possible before and after the wedding! We cleared our schedules so there were no big events in the weeks before and after the wedding. This is so much easier said than done, but I cannot stress this enough: resting is the most important thing your PwME can do to prepare for and recover from the wedding.
Minimize the PwME's Wedding-Related Stress This was SO difficult. My PwME crashes when he's exposed to stress or strong emotions. Sometimes, wedding plans would fall through and my PwME would feed off of my stress as I tried to resolve the problem. I'd recommend finding someone to talk to so the stress doesn't get bottled up and spill over to your PwME.
Challenge your Mindset. It's so easy to get overwhelmed when you're trying to plan a wedding with someone who can barely talk to you sometimes. As the healthy partner, I did a disproportionate amount of work and I had to be at peace with that. My PwME couldn't help much with the wedding planning (which made him sad because having a "normal" wedding was important to him, and the sad emotions would then cause him to crash) and I would easily get overwhelmed because all the wedding planning fell on me, so I tried to see things from different perspectives to keep myself from getting too disappointed or frustrated. For example, I tried to be grateful that the small guest list was a blessing because it saved us so much money. Or I constantly reminded myself to be grateful to my PwME for all the ways he was pushing himself to help even though it didn't look like he was doing much from the outside.
The Grief is Normal I didn't expect to feel so much grief from limiting our wedding; it was another reminder that our lives were stolen from us by chronic illness. It's okay to feel sad even though people expect you to be excited for the happiest day of your life. It's so much more complicated than most of your friends or family will ever know, and that's okay too.
I hope some of these things offer some help and hope for your upcoming wedding plans! I hope you find effective precautions to help you and your PwME minimize crashes and make the day enjoyable for both of you. Whether it's a fancy venue wedding, or a Zoom wedding from your PwME's bedroom, I hope you look back on your wedding with fondness and love. And I hope you are so proud of yourself, because you are an amazing person.
Gentle hugs and well wishes.
– Casey
