My biggest worry for my wedding day wasn’t whether or not the dress would fit or if the centerpieces would be just as I imagined. I wasn’t calling the caterer for moment-by-moment reassurances that he’d written down all the appetizers we wanted. Even bickering relatives weren’t going to break my stride.

The night after we booked the venue I sat alone in bed, staring at the calendar on my laptop. How could I know what December 19th would have in store for me?

My long-term schedule was a very hit or miss kind of thing. At nineteen I was diagnosed with Primary Immune Deficiency Disease—a condition which left me vulnerable to catching infections and viruses. I had a rough time recovering from them too and usually ended up needing IV antibiotics in the hospital.

Later, I was diagnosed with a second condition called Dysautonomia. It’s the dysfunction of the autonomic nervous system and for me, that means having circulation problems (which results in me blacking out every time I stand up too quickly), gastroparesis (when your stomach muscles won’t contract enough to digest food) constant nausea, and migraines.

Even though my symptoms had begun to get more and more out of control over the last few years—it didn’t stop me from working from home full-time and continuing on with my relationship. My fiancé and I had been together for almost eight years now and by the time that anniversary hit—I was more than ready for him to ask the question.

But it didn’t really sink in that we were going to have a real wedding until we put down that first deposit.

We were going to have an actual venue. And invitations. We were going to have a first dance. I was going to wear a white dress.

I had spent the last six months in hospital gowns, in and out of surgeries including one to implant a port into my chest (a small tube to help me take IV treatments at home.) I was feeling more like a science project and less like a 25-year-old in, one of what should be, the best seasons of her life.

Trying to enjoy the process of wedding planning and the actual day was a challenge to balance.

Here’s What I Learned:

1. Remember Your Focus is YOU: Everyone from your mom to your sister to your bridesmaids and venue manager can handle the small details. Your biggest responsibility is to be healthy enough to attend your own wedding. Do what you need to do to stay level. For me, that included a lot of saying, “Sorry, but I can’t do that” during the month before the wedding. I also politely excused myself from situations where I felt my immune system was in jeopardy. I even left a dinner party because someone had a “minor” case of bronchitis.
2. Outsource: Wedding planners and Brides for Hire are a lifesaver for brides with chronic illnesses. Having someone to guide you through the process and even literally steer you from spotlight to spotlight on the big day is an investment worth making.
3. Make a Plan: It wasn’t a worry of whether or not I would have symptoms on my wedding day. It was a worry of what they would be—and how intense they would be. Don’t leave room for error. Pay attention to how much water you’re drinking, how much time you have between each task to rest and make sure to take all your medications before you need them. This is not a day to let your body go off schedule.
4. Give Yourself Space: On my wedding day I ended up preparing at a hotel across the street from the venue, this gave me a lot of space to relax, a bed to rest in while my bridesmaids and family got ready. There was also a designated room with comfortable couches for me at the venue to rest if I needed to.
5. Remember You’re a Bride: It’s funny, but throughout the whole process of planning and prepping I would sometimes forget that this was our wedding we were planning. With all the worries on my mind I let a lot of the details depress me instead of inspire me. When the day came and I found myself walking down the aisle it all snapped into place and I found that the ability to ignore my symptoms became much easier. Remember what the day is about—and let the joy sink in!

 Ilana Jacqueline is the author of the blog Lets Feel Better. She works as a patient advocate with Global Genes and recently signed with New Harbinger for her first book, “Outsmarting Chronic Illness.”

 

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