Planning A Wedding With A Chronic Illness

When Hannah wrote me with the offer to write a post about wedding planning with a chronic illness, I was ALL over it. Why? Well, I have one myself (which is blessedly under control) and my mom also has one – which lead to endless stress leading up to the wedding. ‘Will my mom make it to the end of my reception?’ is, you know, not the question you hope to be batting around a week before the wedding. But interestingly, the post Hannah wrote has a ton of wisdom, even for the most healthy among us. Because seriously… take CARE of yourself. With that, Hannah:

When my dear boy, Andrew, and I first got engaged (and ever prior to that, I hate to admit), I started obsessively scouting out wedding blogs, magazines, inspiration boards, etc. It’s the same old story that many APW readers have experienced. 99.99999% of these weddings look like they were staged out of a movie. (I found APW a few months later and felt perfectly at home!) Everyone has flawless posture and skin, is perfectly groomed, and looks ecstatically happy. However, in all these wedding photos and reviews, no one mentioned anything regarding what I was most concerned about: how to plan a wedding when your health is unplannable.

See, I have two chronic diseases: ulcerative colitis, which is the inflammation of my colon, causing extreme pain and ickyness in places that don’t need to be discussed; and cataplexy, a rare type of narcolepsy which causes me to loose all muscle tone and simply keel over, especially when experiencing any strong emotion. Both diseases are not fully under control and I am still working with a ton of doctors to find the perfect medication. See the problem?

In 2005, almost 1 in 2 American adults reported having at least one chronic disease. About one-fourth of people with chronic ailments have one or more daily activity limitations. The UN reports that 1 in 10 people of the world’s population, 650 million people, are disabled. So, it seems to me that there should be more out there for those of us planning weddings with some sort of physical challenge!

So how to plan a big day when you’re unsure of how you’ll be feeling on your wedding day (as well as on the days before and after)? How to plan your wedding with a disability? Well, I’ve complied a little list of things that are helping me (80 more days until we become matrimonifed!) right now. Thanks to Meg for giving me this opportunity to share with all of you. I hope these little ideas inspire you with confidence to plan for the unexpected on your wedding day too.

  1. Have a backup plan and a backup for the backup plan. One of the things about chronic illness is that you can feel so out of control. Your body does unexpected things, hurts in places you didn’t know existed, limits your ability to do so many things. By creating a backup plan in case I’m hospitalized in June or if I need a wheelchair the day of my wedding (I’m planning on decorating it with ribbons and flowers so it becomes a part of the décor), I suddenly felt confident and stress-free. I shared my backup plans with my fiance and family. I think of these plans as similar to the fire drills we did as kids. If you know what to do in an emergency situation, you won’t panic.
  2. Take care of yourself. No, really, take really good care of yourself. Know your limitations and protect yourself against pressure and stress. You’ve all heard it a hundred times before, I’m sure, but it can be so, so hard to do sometimes, we all need a reminder. Prioritize, delegate, and don’t procrastinate wedding tasks. I give you permission to pamper yourself. Get plenty of sleep, eat well, take bubble baths, light candles, if you are physically able, exercise.
  3. When I asked my boy what his ideas were on this article, he said one word, “Commitment.” At first I thought that was kind of funny, I mean, we’re already committed to getting married. However, when we talked about it, I understood more of what he meant. Our commitment to get married has been strengthened by the many obstacles we’ve overcome as a couple. We’re already living our vows of “in sickness and in health.” Andrew has supported me when I was hospitalized far away from my home (and him!) and in so much. He’s held me when I was in so much pain I couldn’t speak. And I’ve tried to support Andrew in turn when the stress of my health (or lack thereof) becomes a real strain. Keep your commitment to each other strong. Express your feelings about the wedding, marriage, and health issues. Really converse. Again, this all may sound so basic, but it can be a real challenge, especially since engagement can be a stressful time period even without health issues! Continue to date each other, fall in love with each other more and more everyday. I like to write love letters – you know the good, ol’ snailmail kind. Do little things to strengthen your bond and express your love.

One last thing: do something spiritual for yourself and, if possible, together with your beloved. This is different things for each person and couple. Try yoga, meditation, gardening, journalling, going to church, mosque, or synagogue  – whatever works for you! Try developing a couple spirituality. Andrew and I are both strong Catholics; praying together and simply going to mass as a couple allows us to grow individually and as a couple. Developing a spiritual bond creates a strong foundation for our marriage. My faith also brings me comfort during rough times. By going outside myself in my prayer journal, I am reminded that I am so much more than a diagnosis or the pain. I think that spirituality brings us all outside of ourselves, allowing us to transcend circumstances or our own preoccupation with the present. Find time to find yourself and experience peace. Find peace and joy with your partner. And may you find peace and joy on your wedding day, and most especially, in your marriage.

Picture: by Golden Moments (proving that chronic disease is often invisible…)

PS Wedding graduates are back – SOON! I’m figuring out how to best work pictures on the new site.

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