Which is harder -- being the sick spouse or being the well spouse? With a disease like inflammatory bowel diseae (IBD), both partners have their challenges on a daily basis. Here are some tips for you, the well spouse, as you navigate the rocky waters of IBD with the person you love.
1. Be Tolerant
If this condition is new to you, it will bring new challenges. If your spouse has had IBD for a while, there could still be new surprises in drug side effects or related conditions. IBD will change both of your lives, but it does not end your lives. You'll need to get comfortable talking about diarrhea and stool and all matter of medical terms. But take heart -- you and your partner will probably learn to laugh about it!
2. Educate Yourself
Digestive disease isn't likely to be something you read or talk about every day (unless it's a joke on a late night show). That means you'll need to seek out information about IBD to learn about it. The more you know about IBD, the better you can deal with the disease medically, socially, and personally.
3. Educate Others
Well-meaning but unthinking relatives and friends can make very hurtful statements like "it's all in your head." Especially with digestive disease, there's a lot of myths and misconceptions in the public perception. Be ready to educate some folks about IBD, and for those that you can't reach, make a plan as to how to deflect the subject when talking to them.
4. Be The Press Person
It's sometimes difficult for your spouse to explain to people why she or he must use the bathroom immediately, can't eat certain foods, isn't feeling well, or is unable to attend social functions. The specific circumstances will determine how you handle the situation, but if it comes from you, it spares your spouse some embarrassment.
5. Respect Your Spouse's Diet
Diet is a very tricky issue for several reasons. Some people with IBD know what foods will bother them, and for others it's still a learning experience. Don't try to talk your partner into eating something that might be a problem, or make unkind remarks their dietary choices. It can be difficult at times, especially when the restrictions affect the entire family, but remember that your partner didn't choose to be ill. Better that your spouse take care of themselves properly and avoid needless flare-ups.
6. Learn to Compromise
Any partnership requires a certain amount of compromise. As the well spouse, however, you may feel as though you are doing all the compromising. If you're not careful, this could lead to resentment. Remember that no one chooses to have IBD, and your spouse would like nothing better than to live a healthy life without restrictions. Be open and honest about the compromises you're making, and keep the air clear between you.
7. Know the Doctors
At times, your partner may be medicated or otherwise unable to speak for himself or herself. In those instances, you'll be the person who can speak for your partner, and it will be best if you already have a relationship with the medical team. Keep on top of what's going on with your spouse's health, be in contact with the doctors, and have the emergency medical numbers on hand.
8. Have a Plan
Things are going to be different when it comes to travel or even taking a shopping trip. You and your spouse are going to need to think ahead when it comes to being away from home for any length of time. Planning can mean anything from finding where the bathrooms are at shopping centers to having an emergency kit available in case of an accident. It just takes a little more thought, and both of you will be far more comfortable when you're out and about.
9. Know About Drug Side Effects
Some of the medications used to treat IBD are very powerful. Almost all drugs have side effects, and IBD drugs are no exception. When your partner starts on new medications, it can be both an exciting time and a scary one. Be sure to educate yourself about how any medication may affect your partner. Reading a list of side effects can be frightening, so a better choice might be to discuss possible adverse effects with a physician. Once you know that fatigue, irritability, weight gain, and even mood swings can be drug side effects, you will both be better able to deal with them.
10. Get Help When You Need It
Being the closest person to someone who has IBD isn't easy. And at times, it can be very demanding on you, as well as your health and well-being. That is why you need other people to lean on, or even respite care if your partner is undergoing a particularly difficult time or is recovering from surgery. Don't be afraid to take time for yourself and to ask other family members or friends for help when you need it.