Be a Light This Holiday
These weeks are busy for everyone - the parties, the shopping, the decorating, the traveling, the gathering. But if you have a relative or a friend sick with a chronic illness, their bodies can not keep up. While the world around them swirls with hyperactivity, their symptoms force them into passivity. And the gap between them and the rest of the world can make them feel even more isolated. I know because I’ve been living with debilitating fibromyalgia for over 17 years.
The holidays are tender times for those who “live” with illness. That favorite holiday movie, It’s a Wonderful Life, has Jimmy Stewart’s character George questioning his very existence and the meaning of his life as it careens out of control.
For your relative or friend who is sick, they question the point of their existence ALL. THE. TIME. We feel we are burdens, expensive and troublesome. Our lives are out of control because our bodies are out of control. It’s not just a packet of cash to pay off a bank debt that’s gone missing. We miss out on a lot - romantic relationships, having children, the dignity of a job, a run in the park, a trip to the cinema. We miss our healthy bodies most of all, and we miss enjoying agency over our lives, our schedule, our abilities.
And all those feelings are magnified during the holidays.
If you want to make the holidays easier and a time of meaningful connection and community for a chronically ill friend or relative, here are some concrete suggestions:
Don’t Judge by Appearances
Many who live with illness are not obviously sick. Most chronic illnesses are invisible. Pain is invisible. Insomnia is invisible. Weakness is invisible. I may defiantly apply red lipstick but inside I am still sick. Don’t disparage or judge. Just because you can not see does not mean you can not understand or support them. Believe them.
Check In Often
I once spent Thanksgiving in a sprawling house with 20 people. I was not well and had to stay in bed. No one came and hung out with me. I could hear all the activity but could not participate or join in. For hours, no one checked on me to see if I needed food. (I did.) Finally two children under the age of 10 wandered into my room, and they asked after me. And they were instrumental in getting me a meal.
But Give Them Space
This admonition appears to contradict the advice to check in regularly, but it doesn’t. Ask your loved one if they need quiet or to rest, and if so make that happen. If they actually speak up and set a boundary - because trust me it’s really hard to do so when you feel sick - then respect them. Sometimes I really have to be alone because I feel so awful that I can not bear the stimulation of noise or the commotion of other people. Trust that this is not what I want but what I need, because seclusion is not usually the first choice.
Be Flexible
There are no guarantees with a chronic illness. Sometimes my mornings are awful. Sometimes they are my most energetic hours. If you have a relative, ask them what time of the day is best for them and plan the meal or activities so that they can participate.
Honor the Effort
The holidays are stressful for every one. And getting everything done requires focus and exertion. This is exponentially true for your relatives or friends living with illness. Even the basics of living such as getting food, cleaning, sleeping can be challenging. So if your loved one who is ill actually managed - through herculean effort to assemble and wrap gifts - celebrate that effort. Don’t disregard that. Honor that push and the physical cost they incurred - because I guarantee there was a cost - and distribute the gifts.
Offer Help
This year I had planned to forgo a Christmas tree as I was feeling overwhelmed. But a friend offered their help with my tree trimming. The sight of the tree is a gift that keeps on giving and gives me a feeling of warmth and love, which is the spirit of these holidays. Volunteer your time to aid your friend or relative. You could also offer help analyzing and organizing holiday obligations and kindly suggest ways to streamline.
Adapt as Possible
My family hiked every Thanksgiving morning. It’s still something I love to do if I’m able as I find “forest baths" very healing. But the truth is I am usually not able to hike, or if I do, I’m relegated to bed rest for the remainder of the day. At times, when I’ve pushed myself, my companions have barreled ahead of me. As I’d watch their asses disappear in front of me, trailing behind became a metaphor for ALL the ways I am behind in my life and left out. So if you have traditions that involve physical activity, adjust your pace and movement to your relative who is not as able as you. Or better yet, develop some new holiday traditions that they can participate in - maybe a holiday movie or a board game or puzzle.
Involve Them
I love to cook, but standing and cooking is often just not possible. Sometimes I all can do is sit and peel or sit and dice. Ask what they can do and let them help and be involved. If that activity is too much, perhaps set up a comfortable chair where they can be nearby.
Though, sometimes I can not even attend a gathering, especially if travel is required. Traveling during the holidays is really hard for anyone, and it’s much worse if you’re disabled and/or in a wheelchair. So, if your sick family member is stuck out of town, let them know they are thought of because disregard is the worst. Send photos and videos for connection. Set up a Skype call so that they can be with you in the room virtually.
Recognize Limits
If I am not able to travel or attend, do not ever say - “As you wish.” My constraints are not a choice. If I could overcome them, I would. I already feel pretty awful I can’t participate and that I am in this jail. My inability is not a choice. My illness is not a choice. Do not imply my absence is as I wish. It is not.
Do Not Force Gratitude and Cheer
And if I am not feeling particularly grateful, do not begrudge me that either. I am not grateful for my health, because I don’t have it. I am not grateful for my life, because my life is not what I want it to be. Sometimes the only three things I am grateful for are my fitted sheet, my flat sheet and my pillow case. Leave room to acknowledge the sadness they feel about the losses in their lives. Be a witness to that loss without demeaning or diminishing their reality. That can be enough.
Invite Them
Do not wait until I say I am feeling great to invite me, as you may be waiting for a long time. You will never make me feel bad by inviting me. And I will not feel obliged, so do not worry about that either. If I can not get out, if I can not join you, I will tell you. More than once, loved ones and friends made the decision for me and did not invite me because they were waiting for me to be better. That’s hurtful. Please don’t ever stop inviting me. Every one wants to be invited and included. Everyone wants to participate.
In It’s A Wonderful Life, Clarance, George’s guardian angel, reminded George how he had affected his community by showing what Bedford Falls would have been like without him. In doing so, Clarence saved George from suicide by showing how much he mattered, his influence and his significance. And an outpouring of help showed George how very much they loved and appreciated him.
Be an angel and remind your sick relative that even if they are not earning a living, even if they can not travel for the holidays, even if they can not be - they way the wish they could be - they still matter. To you.
Cassandra Marcella Metzger, JD, MA, RYT is the creator and founder of the newly, launched Wellspring Stones ― the online oasis for those living with illness. After she struggled to find accessible and applicable help on how to live well with illness, she decided to prove that living well while ill wasn’t an oxymoron. A yoga teacher and meditation instructor for over thirteen years, she is passionate about creating space for change so that those living with illness can feel alive, dynamic, valued, engaged and connected. She advocates to give voice to the shame and suffering of those who are chronically ill and struggling without help, without resources and without attention. To read her other Huffington Post posts click on her profile above.
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