Guest post by Jen Roberts
Holidays are often portrayed as this ideal, cheerful and cozy time spent with family. But real life doesn’t always end up that way. It tends to be a mixed bag with some highs and lows. When you are grappling with the losses associated with a complex, invisible illness, it is easy to get caught up in a vicious cycle of anxiety, sadness and stress. After all, your family has been affected by Long Covid, an illness that is unpredictable and causes extreme fatigue, breathing issues, neurological symptoms, pain, and plenty of mysterious symptoms no one can explain or treat. At this time of year, there are expectations to travel and socialize, there are noisy environments, lights and music, and the normal routine is disrupted. If you are finding it difficult to meet those expectations, you are not alone! Even when things are going well, I often find it difficult!
Like many of you, some of my family and friends understand what we are going through better than others. My view is we can’t expect everyone to get it, and to some degree you have to experience it to completely understand. But it would be nice if people asked how our kid is doing, right? Why do some of those we love seem to completely avoid the topic? Or even express opinions about what is happening based on almost no information? With a more accepted illness, most people would ask how the child is doing. How is the family doing, is there anything we can do to help, etc. We don’t really have that privilege, especially given the politics around the pandemic.
I used to think it was all politics, but I’m not so sure anymore. It’s broader than politics. In psychology the term “cognitive dissonance” describes how uncomfortable we humans feel when the reality of what we see/hear/know doesn’t match our belief system. You can’t believe Covid is over, and also believe your relative has Long Covid. In order to believe the latter, you’d have to change your world view. Most people aren’t going to do that. Another form of cognitive dissonance plays a role in understanding invisible illness. People don’t understand things when what they see (a healthy-looking person) doesn’t match with what they are told (a person has disability).
A conversation over Thanksgiving with a relative who had one too many drinks made me realize that some folks just see the world the way they want to see it and will force things to look that way if you let them.
Don’t let them. You are in control this holiday season.
People will surprise you with their attitudes, questions and judgements. It is hard to maintain boundaries, especially those that need to be there to keep your child from being overstimulated and exhausted. Keep going, be consistent and don’t give in to well-meaning (or not) relatives who try to push you and yours to do something not in your best interest. Do not be afraid to call the shots! You will not ruin the holiday. In fact, you will be making it possible for your child to make positive holiday memories with family.
Tips for Staying Sane:
If your family has had the stressful couple of years mine has had, consider approaching the holidays Marie Kondo style. Don’t do anything that won’t bring you and your family joy. Analyze each piece of your plans.
Taking a road trip? Ask: Will this bring me joy or a nervous breakdown and a recovery timeline of two weeks?
Planning to stay at a relative’s house with lots of family and worried about how that will work? Get a hotel room nearby so whoever is in need of rest can know they have access to that quiet space. Alternatively set up a room in the house as a quiet room.
Sending out holiday cards? Consider making them New Year’s cards this time, or not sending at all. Even an email could work for this year.
Cooking for family? Ask folks to bring more than typical, and purchase pre-cooked items. They will survive!
Trying to come up with activities that your kid with Long Covid can participate in? Try having them read out crossword clues to family members who are interested, or read trivia cards.
Aim to communicate your needs to others. They do not understand, and we cannot expect them to understand unless we communicate. What we can expect is for people to listen to us and respect our needs. If they don’t, it might be time to sit outside and look at the stars, or visit that hotel room.
You can’t force loved ones to examine their cognitive dissonance, but you can establish boundaries and make plans. This removes any debate and gives concrete actions to extended family to work with, and is a lot easier for most to accept and understand. It might feel uncomfortable at first, but stay strong and you will be thankful you did!
To learn more about how to support your child with Long Covid, view our interview with a therapist who works with chronically ill children here.
Click here to connect with other caregivers in our bi-weekly zoom meetups.
