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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  • I don’t think it is coincidence this was posted today. I think I really needed to read this. My family and I are working through something that we didn’t foresee. I’ll have to share these little ideas with them to keep all of us going through this time. Thank you.

  • Jennifer

    (I usually go weeks without commenting, and now suddenly I find myself drawn to comment for a third day in a row!)

    Thank you for sharing this. I am blessed enough not to be dealing with any health problems myself, but my soon-to-be-mother-in-law is dealing with multiple chronic conditions, and has been in the hospital since January. We’re still operating on the assumption, based on progress to date, that she’ll be out of the hospital by the time of our wedding, which is still some months away, but I’ve definitely had that “what if she’s still in/back in the hospital” niggling at the back of my head, and I’ve hesitated to formulate a backup plan for that because it feels too pessimistic. But instead I keep stressing about it. So you’re right – it’s like fire drills. Probably – hopefully – the plan won’t be needed, but if we figure it out now, we don’t have to worry about possible panic later.

  • Melinda

    My fiance and I have both been dealing with chronic health issues, so this article was very relevant. It’s hard, but dealing with such large issues this early in our relationship prevents us from having illusions that the wedding will be about a party, or a dress. It’s much bigger than that, and makes silly articles about going on a crash diet to look perfectly thin for the big day seem like they are from another planet. …which makes me enjoy APW that much more.

  • FM

    I’m so glad this topic is coming up. Health is such a big issue that is often ignored in the wedding planning process, which is weird because intense stress contributes to or triggers so many illnesses and the wedding planning process is so stressful for so many people. In my case, my previously very under control chronic illness flared up for the first time in years while planning my wedding, I believe triggered by wedding planning stress – just in time to keep me from being able to eat or drink alcohol for my bachelorette/shower weekend and requiring me to field questions about something I purposefully hadn’t really talked about with my husband’s family and many of our friends. It was a big reminder to me (and my husband, who was really dealing with it with me for the first time) to prioritize in those last weeks before the wedding (prioritize my health!), and to let go of whatever tasks and stresses I could eliminate, minimize or delegate.

  • Meg

    Thanks so much for this, Hannah and Meg.

    I have Crohn’s disease, which is very similar to colitis, so I know exactly where you’re coming from, Hannah. I hope you’re able to figure things out medically soon. Kudos on being strong enough to plan a wedding through it all and for sharing your experience and advice with us. I wish you all the best and look forward to reading your wedding graduate post. :)

    • K.O.

      I have Crohn’s too, and I’m glad these issues are being talked about here. It seems to be something that is always kept secret because it’s considered un-glamourous. Especially IBD, :)

  • Esther

    Thank you for this. I’m coming to it from the opposite perspective — physically I don’t have any chronic illnesses, but my fiancé is has Chronic Fatigue Syndrome — and it’s great to see these tips and encouragement from other people dealing with balancing planning and health.

  • Alyssa

    Hannah, you are lovely. (and with cute glasses! I’m a glasses bride too, don’t let anyone talk you into contacts for the wedding unless you really want them!!)

    This is a great and REALLY important post. I don’t think I’ve seen anyone talk about dealing with personal illnesses before. Sure, there are posts about dealing with family issues but it’s all in the vein of how it affects Your Big Day. I know this post will help a lot of people; not just now, but in the future when some baby bride stumbles along it and feels better because of it.
    (I like to think of the newly engaged as “baby brides,” because I imagine them as cute and wide-eyed and optimistic and not yet cowed by the WIC. Like Thumper, with an engagement ring. Which is probably slightly degrading and maybe a little bit sexist, but hey! You can comment on users’ posts now, so I’ll see your ire directly.)

    And Hannah, your comment on a spiritual activity is so smart, even when not dealing with a chronic illness. In a marriage you share just about everything, but spirituality is often overlooked. The Boy and I are dealing with this; it’s such a private thing for me, but I know that it’s something that will make us stronger when dealing with the adversity that comes along in life.

  • Nina

    A year ago I had some symptoms that brought me to a doctors office and a blood test seemed to indicate a chronic disease. Same disease as my mom, so while I knew it was possible to live with, I also had witnessed her struggles. Fortunately several months later a specialist confirmed that that was not the case. I still know this diagnosis could lie in my future, but for now I feel very fortunate and nothing has taught me more about the importance of “in sickness and in health” as that experience. All I could think about when I would cry and dread what lay ahead for me was at least I have him. He’ll stick with me, we’ll do this together. I think it was the first time I started to realize what marriage and partnership really truly means.
    I wish you all the best on your wedding day and I know when you two say your vows, it’ll be the most honest and heartfelt words in the world.

  • Thank you for this. Just, thank you. I found the same limitations in planning resources to welcome guests with chronic illness and mobility challenges, and I really appreciate you (and APW) for talking about some of these issues publicly and how it’s different planning a wedding when you’re grappling with personal health issues too. I wish you all the day-of-luck and lifetime-joy on this wedding planning journey.

  • Two months before our wedding he had to take me to the ER where we learned I have kidney stones, and lots of them. We were just crossing our fingers I wouldn’t be on morphine for our wedding.

    My parents were blessed to be able to squeeze their wedding between my dad’s mother coming out of the hospital with back problems and my mom’s mother going into the hospital with cancer. It wasn’t easy but they are so glad they were able to make that work.

    This is definitely not a topic I’ve ever really seen covered anywhere else in the wedding world. Yet it’s something so many people have to deal with.

  • I’ve been reading this blog for about a year, and suddenly I feel compelled to comment for the third day in a row.

    Although the chronic illness is not my own, I too am working out plans to deal with a chronic illness. My mom suffers from leukemia, which not only leaves her tired, but the soreness in her joints and constant swelling in her arms and legs makes standing for long periods and walking (particularly up and down stairs) difficult, and precludes wearing elastic around wrists, etc. She is too proud to use a wheelchair, so we’re working on other options to make sure that she feels included without wearing herself out.

  • Great post. So far my wedding planning with a chronic illness (lupus) has been “hope and pray I feel well the week before and after my wedding…and do nothing else to prepare”…probably not the greatest technique! Mama needs a Plan B and Plan C.

    I think I would add as a tip to start early. I love crafty things, and had big hopes for DIYing a thousand projects. By starting early, I can get more of these projects done. But I’ve also had to nix several DIY projects so I don’t get over-stressed the week before our wedding (because stress brings on flare ups).

  • Thank you SOOOO much for this! I have UC as well, and can barely manage to get to work some days, let alone get through an entire event. Stress makes it even worse…and though it is a happy occassion, my wedding planning has been nothing BUT stress, so i’m living in flare-up land. I think your ideas for coping are dead on- my fiance and I have joined a gym, and are going religiously. The trainer provided even gave me some workouts/yoga poses to help with my pain management, and my special “medical necessity” card allows me to use a private restroom. Being in an environment like that, where I can let off steam, make my body stronger, and also be supported is a great relief. Having a supportive husband to be helps as well! We are working on our backup plan, just in case I, like you also worry about, end up in the hospital come wedding time. I guess the point of this whole long comment is just to say hey, I’m so glad to see that i’m not the only one dealing with this issue, because everywhere else I look, perfect couples are planning their perfect weddings and nobody has to worry if it will all go south due to health.

  • Thank you! This is a wonderful and much-needed post. We have several guests whose health, sadly, cannot be predicted easily, and I wish more people understood how vital it is to accommodate their potential needs. I wish you the best health and happiness.

  • I really like your one last thing. My chronic disease doesn’t prevent me from doing much (maybe having babies?) but I think that going to Mass with David really reminds me in a serious way that what we are doing is more than a party and that we have something enormous in common, that there is a lot going on in our marriage preparation and wedding planning that is out of our hands and to come to terms with that. Great post!

  • Magdalena

    Thanks so much for this post. I developed a chronic illness in the middle of the engagement that knocked me flat on my back. It’s so hard for me to read the blogs and the forums – all the other brides seem so chipper, so pain-free, so d*mn… HEALTHY.

    Pre-illness, I loved researching bouquet inspiration and figuring out what kind of veil I should have and all those other lovely wonderful pretty things that seem silly now that my mind is absorbed with pain. I used to enjoy it so very much.

    Like Hannah my guy and I are very devout Catholics and it helps a lot to go to Mass together. He’s the only one in my life who has been supportive throughout this. I joke and say it’s our weekly spiritual spa time. One hour per week where we can sit next to each other and think about God and not about guest lists and medication and symptoms.

    I think about what the Church teaches about love and marriage and it brings home to me that I am not a “failed” bride because I lack the energy to go see my dressmaker or I’ve lost interest in invite design thanks to my new time-consuming hobby of scheduling appointments with specialists. A successful bride and groom are the ones who can give themselves to each other fully and completely. It’s not going to matter if the DIY flowers look sh*tty or if I have to sit down through the entire reception.

    And about having to sit down at the reception. This experience really has taught me not to take things for granted. I have never been a big dancer and I wasn’t really looking forward to dancing at the wedding. When I would say this my mother would always interject, “You have to dance when you can and you have the opportunity. Enjoy it because it’s not for always.” And now there’s nothing I want more than to be able to dance at least once on that day.

  • Thank you for this post.

    So many people have these kind of things to deal with, but it seems most don’t talk about it.

  • AT

    Thanks Hannah and Meg for bringing an important issue to light that is never covered in mainstream planning sites. My husband has a chronic illness, and I am happy to say we had a beautiful wedding day. We were cautious in the days leading up not to schedule too many things and to make sure he was able to maintain his regular sleep schedule. Another important thing for us was the day after – our honeymoon travel plans were very loose (road trip) which was good, because he needed (both of us actually) some downtime before we left, and so we postponed things a bit.

    Love how you ended the post too – peace and joy to you Hannah and Andrew.

  • Liz

    I’m hopping on the bandwagon of gratitude for this post. My mom has UC and regularly has issues related to a decades-old surgery. Lately, it’s been day-to-day on whether or not she can eat solid food, and I know she’s worried that she won’t be able to enjoy my wedding day to the fullest or even worse, be hospitalized. But with the wedding 7+ months away, it’s nothing either one of us can productively spend time thinking about.

    It’s nice to know that we’re not the only ones out there dealing with this type of thing.

  • Courtney

    Amen, sister! I have chronic health problems myself and I know how frustrating it can be to try to plan events in the future and often, the more important the day, the more the stress can trigger symptoms.

    So far my problems have been more about attending (or not being able to attend/enjoy) other people’s weddings rather than anything related to any of my own milestones. The important thing from the guest perspective is that you really want to show up, show your joy and support for the friend or relative you’re happily celebrating, and be able to make whatever little adjustments you need to get through it–whether that’s not dancing as much, having to leave early/arrive late, not being able to eat all the food, whatever. I may not always look like the most celebrating guest, but I’m dancing inside. If the happy couple gets that I wanted to express my joy for them, then that’s all that matters.

  • Mary

    Oh yes. While not all of my health ailments rank as “chronic”, they are almost all stress aggravated. Wedding planning, particularly in its final stages, was definitely made more difficult by my health problems, and wedding planning likewise made my health problems more difficult. I have IBS and was terrified that I’d end up incapacitated in some form on my wedding day. While I did spend a ridiculous portion of our honeymoon and our wedding night camped out in the bathroom, I was pretty fortunate during all the other festivities.

    I was definitely more concerned in the final countdown that my father wouldn’t be able to come, or that he wouldn’t really be himself if he was there. He had a horrendous Manic episode about a month before the wedding and was hospitalized for over a week as a result. It was very emotional to be escorted down the aisle by him. It was nice to have my dad back.

  • Amy

    Thank you for this post.

    So many people have these kind of things to deal with, but it seems most don’t talk about it.

  • Heather

    It’s so refreshing to see an article about this.

    I also have Ulcerative colitis, though mine is in remission right now. I’m so terrified of becoming ill for my wedding and/or honeymoon.

    One of the big things I’ve been running into: I keep looking at checklists on line which say to buy your dress about six months before and thinking…but what if I flare? I could easily gain or lose so much weight from the disease and the steroids used to treat it.

    Also, the comment under the picture noting that chronic disease is often invisible…so true. It’s ridiculous how often people think that if you don’t look sick, you don’t have anything wrong with you. But it’s really not that apparent.

  • Maria

    I can really identify with all this – I have Fibromyalgia / CFS-ME / IBS / Bipolar / coccyxdynia / vulvadynia / Schizophrenia and Endometrosis (yeah quite a lot happening) my husband to be has severe narcolepsy cataplexy (currently sleeping 18+ hours per day even with medication) – we are planning for june 2011 (tried for 2010 but both severely ill at time and unable to proceed)

    In a personal context we see the good the bad and the ugly in each other and want to be with each other because of the bond and strength of our love. I plan on wearing something that is comfotable for me on the wedding day – he is well aware i could wear pjs and i am aware he may get emotional and experience cataplexy – have booked venue with private rest room available if needed – vows will take place with us seated to prevent him / me falling down

  • Jenna

    Thank you so much for this post. For the last five and a half years, I’ve had chronic shoulder pain that until last year was unexplained. I traveled with my parents to doctors all over the US until we walked into the office of a doctor in Lexington, Kentucky who immediately knew what was wrong. In March I had surgery to reattach several muscles of my shoulder to my scapula. I still have pain, especially if my stress levels are high (hah!) but my bad days now were my good days before. I know, and have already experienced, that planning this wedding is going to give me some flare-ups. But now I’ve just got an awesome scar to show for the progress I’ve made!