Crohn's and Colitis are usually invisible diseases. This means that while the individual might look just great on the outside, on the inside they may be suffering varying levels of pain, exhaustion, fear, malnourishment, severe diarrhea or constipation, lack of appetite, nausea, heartburn, joint pain and muscle aches, anxiety, depression and more. We are often embarrassed about our disease and the symptoms it causes and so we try to put on a brave face. Sometimes that brave face catches up to us and we break down.
Having a friend, spouse or partner who truly understands and knows how to be supportive in the right ways can make a world of difference. Feeling alone with our disease is crushing.... feeling understood can be a ray of sunshine. Here are some tips to help you be supportive in the best ways possible.
- Never, ever, ever make comments about how frequently we use the rest room. Statments like "Again?!" or "But you just went!" are hurtful. We are well aware of our double digit bathroom count and don't need to hear it or be reminded that other people notice it.
- If we need to interrupt an activity, an outing, a car-ride or even intimacy to use the washroom, or to just rest... please be understanding. We would not be putting things on temporary hold if it wasn't absolutely necessary. It's better to be safe than sorry.
- Help us to make light of situations and laugh at things when appropriate. Make a joke, smile a silly grin and make up crazy words like "crapaclism"! If you sense that jokes aren't being appreciated at the moment... let it drop. Sometimes we are in a grim head-space.
- Be tolerant of food restrictions. If you have to eat some low fibre meals, or can't go out for mexican food, know that your partner thinks you're awesome for understanding.
- When we are in a flare up, take some of the load off. Help out where you can, especially running errands because being away from the house is sometimes difficult.
- As tempting as it is, not eating is not an option. Gently encourage and remind us to eat some healthy, mild meals.
- You can't help much with the physical symptoms, but for spouses and partners, a nice gentle massage of the lower back, sides and abdomen can feel like a miracle; sometimes helping the pain better than medication. It's romantic too!
- Just listen. Sometimes we need to vent to someone who will listen without judging or fixing things. Someone who will commiserate ("Yeah, that does suck!") and let us get things off our chests.
- Don't let us wallow. Sometimes, if we are in a pattern of wallowing or complaining, we just need someone to listen. But sometimes we need a friend who will remind us of our many blessings, help us focus on the positive and keep a view of the big picture. Don't let us start to think that everything is all bad all the time.
- Be patient. A side effect of frequent washroom trips and poor nutrient absorption is that we are probably feeling tired and sore. Don't make comments like "Wow you're out of shape!" Instead try to understand that physical activity is often a tough battle. Help us to take it slow by going for walks and keeping outings as short as we can handle.
- If we talk to you about resolutions we are making or things we want to change, help us to follow through. If we mention wanting to get more light exercise, pay off debt, or simplify our clutter, help us out and don't let us lose focus. Having IBD can make you feel like your life is on hold and you aren't accomplishing much. Help us to follow through on small projects and achievements so we'll feel better about ourselves and our situation.
- Being in the hospital is scary, lonely, and embarrassing. Visit often, bring lots of good cheer, games, audiobooks, magazines and jokes, and keep your bad news for another day. This is not the time to give us more to worry about because this is usually when we are at our lowest point, and need you at your best.
- Celebrate the good days. If we are in remission or just having a particularly good day or week, celebrate! Let us rest but also encourage us to pack in a lot of fun and productivity into our good days. Help us to appreciate how good we feel today instead of letting it pass us by.