Sharing your needs with family in advance can prevent misconceptions about your chronic illness during upcoming holidays.
The holidays are meant to be a time of joy when families come together for celebration. But not all gatherings end up greeting-card perfect. Expectations are high, and stress levels can be even higher. Throw in family dynamics and a chronic illness or two, and you have a situation ripe for disaster.
If you live with a chronic condition like multiple sclerosis (MS), diabetes, fibromyalgia, or Crohn’s disease, you know how hard everyday life can be. But that doesn’t mean your family automatically knows that, too. The best way to prevent uncomfortable holiday moments is through communication.
“I’m clear with everyone when I’m not feeling well,” says Jenni Prokopy, communications strategist and founder of www.chronicbabe.com. “I’ve learned to keep the drama low but the honesty high.”
Prokopy lives with fibromyalgia, along with a list of other chronic illnesses, and she has recently gone gluten-free. “I ask for what I need—which is usually a little quiet time to myself in a cool dark room—and the family obliges.”
The more you know about one another’s conditions, the more helpful and understanding you can be. Instead of feeling insulted when your uncle refuses your homemade pumpkin pie, knowing about his diabetes ahead of time will give you a chance to demonstrate your compassion and offer a suitable substitute.
Prokopy and her boyfriend are planning to visit his family in Cleveland this holiday season, so she’s packing her own snacks to take along on the trip. “I’ve offered to cook some of the meals to make things easier on my boyfriend’s mom,” she adds.
Invisible symptoms like fatigue and pain can also come into play over the course of the holidays. So help family members understand what’s going on with you—and try to extend that understanding. For example, understand that your aunt didn’t leave the room to go lay down because she dislikes your company. She may tire easily because of her MS and need to nap for a while before rejoining activities.
For Prokopy, yoga helps her ease her fibromyalgia, and for the past couple of years she’s “gotten the family accustomed to me doing yoga twice a day in the common area. But I always put away my mat and other tools, because my boyfriend’s mom likes things tidy.”
So how do you broach the subject of illness when it might not be so easy to talk about? Often relatives and friends can be in denial about your condition, especially if you don’t look ill. For someone who has a chronic illness, talking about it may feel awkward or embarrassing.
Having someone in your corner who understands your condition is helpful. He or she can be present and supportive while you share your special needs with family and help you educate the curious about your condition at the same time.
If you don’t have an ally who can step up for you, share your concerns in a letter. This can be an easier way to share the idiosyncrasies of your chronic condition in a way that allows you to steer the direction of the message. End the letter by inviting loved ones to approach you with questions if they want to know more.
Advance planning can prevent holiday blunders and give those who live with chronic illness time to prepare. With some delegation of tasks like shopping or cleaning, others can help make the transition into the stressful holiday season effortless for those with special needs. Knowing ahead of time what someone’s dietary needs are, for example, will allow your relatives to come up with their own solutions that you might not have considered.
Let friends and family know beforehand that you might have to arrive late and leave early, or skip eating, or that you need them to slow the pace of conversation so you can more easily follow along. Your friends and family want to know these things in order to be sure they are doing their part to help you enjoy your time together.
Remember that it’s up to you to initiate the conversation. It often seems rude to bring attention to another person’s illness. By starting the conversation, you are saying that you’re willing to help them understand. They will be relieved to know your condition isn’t a taboo subject, and you might come away with new allies who can help make your life more livable going forward.
And acknowledging others when they are making an effort to help is always appropriate. “I make sure to express gratitude whenever someone helps me or does anything that makes things easier or more enjoyable,” Prokopy points out. After all, “Positive reinforcement is an incredible tool!”
Get the hard part out of the way up front. Allowing others the opportunity to help in their own way is a gift worth giving. Then everyone can focus on enjoying the important things, like quality time spent together this holiday season.