Planning a Wedding with a Chronic Invisible Illness

October is Dysautonomia Awareness Month, so I decided to do an article about planning a wedding with an invisible illness. For those of you that don’t know me well, you probably don’t realize that I am disabled. I have multiple conditions that affect my daily life (including dysautonomia). I will give you a short rundown of what it is and what some of the symptoms are.

My first diagnosis was POTS. That is Postural Orthostatic Tachycardia Syndrome. POTS is a form of dysautonomia that affects blood flow. When I stand up, my blood pressure drops drastically and my heart rate increases (often as much as going from 80 up to 160 in a matter of seconds). This causes dizziness and often fainting upon standing. Some of the other symptoms that I experience from POTS are daily headaches, chest pain/pressure, heart palpitations (feeling your own heart beating), fatigue, shortness of breath, brain fog, sweating abnormalities (I hardly sweat at all, even in 100 degree heat), and general weakness.

I wish this was the only thing wrong with me, because it is difficult enough to deal with. However, I also have Hashimoto’s Disease and Hypothyroidism. Hypothyroidism is caused by Hashimoto’s Disease. It is a condition in which your thyroid does not produce enough of certain hormones. These cause many symptoms. For me those are fatigue, increased sensitivity to cold, pale and dry skin (I have been known to scratch my legs until they bleed on many occasions), brittle nails, hair loss, muscle aches along with tenderness and stiffness, joint pain and stiffness (similar to arthritis), muscle weakness, depression and memory lapses.

As if those weren’t enough things to deal with on a daily basis, I still have other symptoms that have yet to be diagnosed.

Everything I have is invisible. You cannot tell that I am sick just by looking at me, which means many people close to me don’t understand the severity of what I am going through. Many people that don’t know me don’t understand why I need handicap parking, feel out of breath just walking, can’t keep up with my friends when we go places, have to sit down every few minutes or have to cancel plans so often. I have also lost more than one job due to these illnesses and people not understanding. In fact, just last month I lost my job. Now I am struggling to find another job that will be understanding of my symptoms and I am trying to start working from home. My dream is to do this blog as my full time job. If you'd like to help me, check out some of the links at the bottom of the article.

So how does having an invisible illness work while you’re planning a wedding?

Whether you have the same conditions as me or different ones, being chronically ill and planning a wedding is a whole different ballgame than simply planning a wedding. Everything in life with a chronic illness is more difficult and more time consuming.

Here are a few quick tips for planning a wedding when you have an invisible or chronic illness.

1. Give yourself time.

If you can, choose a date 1-2 years (or even longer!) from the date you get engaged, and start planning right away. The more time you have to get everything done, the better. When you’re chronically ill, everything takes more time and effort than it does for those who are healthy. You might be tempted to knock out addressing all your invitations in the same day, or going to 3 different bridal shops looking for a dress in the same day. DON’T do it. Give yourself time for each task. Aim for only one dress appointment per day (and per week if your timeline allows it). Trying on dresses can be one of the most painful parts of planning a wedding when you don’t feel good.

2. Be careful with DIY.

DIY is a great way to save money and to personalize your wedding at the same time. However, having a chronic illness makes DIY difficult. DIYing takes a lot of time and effort, even for those who aren’t sick. When you are sick, it takes more time and energy than it would take a healthy person. I’m not saying don’t DIY. Just plan carefully and don’t overwhelm yourself. Don’t take on more than you can handle and make sure you have a good support team that can help you get everything done.

3. Don’t over stress on the little stuff.

Stress and weddings go together like peanut butter and jelly. Seriously. It is so easy to get overwhelmed and stressed out when planning a wedding. When you have a chronic condition, stress is usually your worst enemy. I don’t know about you, but the more stressed out I become, the more flare-ups I get and the worse my health declines. I’m not going to tell you “don’t stress at all” because that just isn’t possible when you’re planning the most important day of your life; however, know when enough is enough and have a plan to relax after stressful events. Do stuff a little at a time. If there’s something you aren’t sure you really need (such as favors, programs, etc.) just take it off the list. As long as it’s not something people will really miss, it doesn’t matter and you shouldn’t add it to your stress.

4. Spend the money for a Coordinator or Wedding Planner.

I know, usually when you have a chronic illness, your budget is a big deal. (With all those medical bills we have to pay, it’s no wonder.) But I promise you, spending the money for a wedding planner or even a day-of coordinator will not be something you regret. Even if they aren’t the greatest, they will take some of your stress level down, as well as being able to help you with small details that can be hard for you. Do yourself a favor and make this part of your budget.

5. Don’t try to “act normal” or healthy.

This is something I really think all of us with invisible illnesses are guilty of. We don’t want to seem as weak, pathetic, incapable, or as disabled as we actually are. I’m not sure why we do that, but we have a tendency to just pretend we aren’t sick -- but we ALWAYS suffer the consequences later. Let go of your pride during the wedding planning.

6. Don't be afraid to accept help.

If anyone offers to help you, take them up on it. Even if they don’t offer, seek out people who can help you, with anything and everything. If you are like anything like me (Type A Control Freak) then it can be seriously difficult to ask for help, or let people help. But you have to do this. There is simply too much to do surrounding a wedding to try to do it on your own. The more you try to do on your own, the more you risk flare ups.

7. Aim to have everything done 2-4 weeks before the wedding.

Get as much done and out of the way as far in advance as you can. When you first start planning the wedding, tell yourself that your wedding date is 2-4 weeks before it actually is. Really make that your goal from the very beginning if you can. Why? Things pop up in the last 2-4 weeks that will cause stress and take time. Keeping your schedule clear of excess stuff will help reduce stress. You don’t want a horrible flare up right before or even during your wedding! You want to spend the last few weeks as relaxed as possible to avoid flare ups at this time.

8. Be prepared.

You know what your symptoms are. Prepare yourself for a flare up on the wedding day. For my symptoms, that meant doing things like making sure I had enough water where I would be getting ready, having medications on hand, wearing flats instead of heels, renting a sofa for the reception so that I could sit or lay down if needed. If you are prepared for a flare up on the wedding day and it doesn’t happen, that’s great! However, if you do have a flare up and you are not prepared, that can be a huge disaster. Over prepare and hope for the best.

So, now that I’ve given you a few tips, I’d like to share just a little bit about how my wedding planning experience went with my chronic invisible illnesses.

I ended up choosing to do WAY too much DIY. Spray painting, printing invitations, making a photobooth, etc. I even made origami flowers to use as bows on my bridesmaids' gifts and faux-leather bags for the groomsmen gifts. I know, right?! So dumb on my part. I made the mistake of thinking “I have to drive 2 hours away for some of the dress shops I want to visit, so I should schedule as many dress appointments in one day as possible so we don’t have to make this trip so many times.”

I truly exhausted myself... horribly... over and over again. I wanted so desperately to pretend that I was “normal." I didn’t want to admit to myself or anyone else how bad off I actually was. I was going to 2-3 dress appointments in one day, then out to dinner. I toured my large campground venue site and hiked down to the river to see what our pictures would look like on the dock. This is the main reason I decided to write this article in the first place-- if it can help even ONE person not make the same mistakes I made while I was planning my wedding, then I can feel like I’ve done my job and made a difference.

I am also a hardcore, self-admitted control freak. I love to be in control and have things go my way. It’s horrible, but it is what it is. I had a hard time asking for help. I wanted to do everything myself, my way, and get it done quickly. Oh, what a fool I was!

I probably wouldn’t even have survived my wedding if it weren’t for my amazing mom (and best friend). Luckily, she’s a control freak too (I guess that’s where I get it from) but she is SO similar to me. She knew exactly what my vision was for everything. She totally got it. She was the only person I trusted enough to really help me. I knew she would do what I wanted, how I wanted it. Sure, there were a few disagreements along the way, but to be totally honest, I could not have done it (and truly may not have lived through it) if it weren’t for her. She made my amazing veil and my beautiful garter. She helped with all my DIY projects. She helped me talk to vendors when my brain fog (or bridezilla syndrome) was too horrible to manage myself. She calmed me down when I needed to be calmed down. She stepped up when I didn’t feel up to whatever the day had in store for me. The closer to the wedding day we got, the more she helped, too. I can’t even say enough about what an amazing woman she is. During the planning and the wedding, she was not only my mom, but also my Maid of Honor, my best friend, my wedding planner and at times my therapist.

A good support system is ESSENTIAL when planning a wedding with a chronic illness. Even if you don’t have that within your friends or family, you CAN find amazing support. Check out the bottom of this article or links to some awesome support resources.

All in all, I made a lot of mistakes when planning my wedding (as far as my health was concerned) but I did make a few good choices too. For instance, I hired a day-of coordinator (she could have been a better match for me, but she did help), asked my mom for help, addressed my invitations over the course of a week instead of trying to bust it out in one day, and made sure I took time to relax. I really started getting into sheet masks, bubble baths and YouTube guided meditations during my wedding planning. I highly recommend you check out all of those!

No matter what your wedding planning entails, just try to remember that it might be the most important day of your life, but it is still only one day. Don’t kill yourself trying to make everything 100% perfect. Little things will go wrong (and probably a few more of them than usual when you have an illness) but at the end of the day, it doesn’t matter. All that matters is that you found someone who is supportive of your illness, cares about you and wants to be with you for the rest of his or her life. You get to marry your best friend.