Most people would say the holiday season can be stressful, and when you are chronically ill, this time of year can offer added stress and exhaustion.
In the online communities I’m part of, I start to see the anxiety levels increasing with questions like, “How will I prepare a meal?” or “How do I get my house ready for guests?”
This is a list for the chronically ill and their loved ones to help them not just survive the holiday season and family gatherings but to enjoy the celebrations as well. This is what we need our friends, family and the wider community to understand about our challenges during this time of year.
1. We have to plan ahead carefully.
I’m sure many with chronic illnesses are like me: I have a careful plan whenever I leave the house, and I try to prepare for all contingencies. Going to family gatherings or parties requires even more planning. This may mean bringing medication, mobility aids and fluids with us. If we’re going to a friend or family member’s house, we may need to discuss our needs with the host or family members.
Many of us wish we could participate in holidays the way we used to, including cooking, decorating and hosting gatherings. To do these things, many of us have to prepare over a few days or weeks. If we try to do it all in one day, we won’t be able to enjoy ourselves or could end up bedridden.
If we have to travel, it’s important to have emergency supplies on hand with us. It’s important to prepare for the worst and hope for the best. Traveling is also extra taxing on the chronically ill, so it may require more time for rest. Each of us knows how much energy we have, so it’s important to conserve and use it judiciously. And we need understanding from others that rest is an essential part of managing an illness.
2. We may need to ask for your help.
During the holidays, it’s easy to set unrealistic expectations for ourselves, whether you’re healthy or chronically ill. If we know an activity will sink us, we may need to ask for your help. Maybe we’ll have to delegate cleaning or cooking. Maybe we’ll have to explain complex dietary needs. Asking for help is hard. Please understand when we ask for help, we’re not asking out of laziness or trying to seek attention. Asking for help is against my nature, but I’ve learned the hard way that when I didn’t ask for help when I should have, I ended up not succeeding.
We know more than anyone else what we’re capable of, so when we communicate our challenges, it’s a declaration of trust. We all need people in our lives who we can rely on when we’re facing challenges. This is especially true for those who live with illness.
3. We have to set realistic expectations.
There can be so much pressure this time of year to create perfect memories with our family and friends. We want our house to look perfect. We want to have the perfect holiday dinner, the perfect party and the perfect gift wrapped in effortless ribbon and glitter. Who can do this? Our holiday doesn’t have to look like it was immaculately conceived in a Pinterest lab. Perfection isn’t realistic for anyone.
I believe it’s especially unrealistic for the chronically ill. It’s easy to ignore our own needs to maintain the appearance of functionality, but our self-preservation is of the utmost importance. We need our friends and family to help us enjoy this time of year without setting ourselves up for failure.
4. Include us in conversations at gatherings.
I often think about how I’m not sure what to say at gatherings. I’m not working, I usually only leave the house for appointments and I spend most of my time managing symptoms and rewatching “Downton Abbey” for the thousandth time. What do I have to discuss with anyone? Sometimes illness can be the elephant in the room when you’re with friends and family, but it doesn’t have to be a focal point. Although some with chronic illness don’t have a vibrant external life, this often strengthens a person’s internal life. We still have much to share.
It can be difficult not to feel sad or even resentful when we hear others discuss working, traveling or exciting social lives. These feelings can take us out of the present and make us feel worse about our quality of life. But I’ve found a lot of joy in just listening to others discuss what they’re doing and living through those experiences vicariously. I think illness has given me the gift of being a better listener and living more in the present. It has made me more compassionate as well. Even though we live on a different scale than most, we want to share ideas and thoughts or just enjoy listening. Include us in the conversation, because we would love to participate and share your company.
5. We have to celebrate on our own terms.
There are a variety of reasons someone with chronic illness has to spend the holiday alone or limit their holiday plans. Health issues can create rifts between family members, and just the sheer physical stress of traveling or going to gatherings is too much for some. I’ve seen some use their online health communities to celebrate with others and feel less alone this time of year.
Sometimes dietary restrictions or energy levels can make participating in gatherings challenging. If we can’t fully participate, please understand we need to celebrate on our own terms. When I go to a gathering, I make sure there’s a place for me to sit or lie down when I need to take breaks. Celebrating on our own terms means we can have a comfortable holiday without extra stress or pressure.
6. We need to celebrate in spite of our challenges.
Maybe the overwhelming stress of cooking a turkey, the sight of singing Santas or having to hear Paul McCartney’s “Wonderful Christmastime” one more time is putting you over the edge, but it’s easy to lose sight of the fact that this is a time of year for all of us to celebrate, reflect and feel gratitude.
It’s easy to focus on what we have lost because of illness, but it’s also important to find something to celebrate, whether it’s spending time with friends and family, cheating by eating food we normally wouldn’t allow ourselves to eat or wearing something sparkly, even if we aren’t leaving our couch.
We need to have some fun and carve out some celebration and enjoyment for ourselves, because we’re seldom truly able to indulge. For many of us with illness, leaving the house and participating in a gathering can be a rare treat, and we often try to participate despite the toll it might take on our bodies. This time of year can make taking that risk worth it.
We are survivors and warriors, and this time of year is a reminder that we made it through another year of battling illness with dignity and grace. That, more than anything else, deserves celebration.
Follow this journey on Kind of Broken.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or illness during the holiday season, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.