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8 Honest Chronic Illness Holiday Confessions

I am always working on finding the right words to describe my chronic illness experience during the holidays. Chronic illness impacts so many aspects of my life. At times, this can be difficult even for just me to manage — which can make having an honest dialogue with friends and family about my needs feel overwhelming.

Over the years, I’ve learned that on the other side of the discomfort I feel when vulnerably sharing the reality of my experience, I often find improved understanding and communication. As I’ve expanded my ability to describe my needs with compassion and clarity, I’ve found my loved ones are enabled to better support me, which has made my relationships feel more authentic.

I hope that these holiday edition “chronic illness confessions” can give you new ideas about how to navigate some of these difficult conversations with the important people in your life. Hopefully, they can remind you that you are not alone (in what can often be a lonely, isolating experience), and help you to have a more honest, loving, and kind dialogue with your loved ones.

Note: of course, everyone’s experience of chronic illness is different, and if some of these “confessions” don’t ring true in your heart, that’s OK! Take what resonates, and leave what doesn’t. There is no right or wrong way to feel.

Now, on to the list!

1. Overwhelming guilt.

I am struggling with more guilt than you can imagine about all the ways I’m unable to show up how I used to; it’s so painful to feel like I am letting you down. Please be mindful about giving me a hard time about missing things, because I am already having a hard time within myself about having to do so.

2. It helps when I can hear you validate me.

Words of reassurance and understanding are some of the best gifts you can give me this season. Even if I know that you understand my limitations and recognize the pain I’m in, hearing you say it out loud means the world to me. It helps me remember (especially when the voice of my inner critic gets extra noisy), that you understand how difficult this is for me.

This time of year especially, I often feel so worried that I am not enough and I am letting everyone down — so when you tell me that isn’t true, it helps more than you know.

3. Canceling plans frequently does not make it any easier.

It’s never an easy decision for me to miss holiday events. I know that it’s disappointing when I have to cancel plans at the last minute. But please remember that my “alternative activity” isn’t something “more fun.” When I’m forced to cancel, it is usually because I have to stay home and tend to my physical pain. It’s lonely and never my first choice. I love you and truly wish my body allowed me to do more with you.

4. “Accommodation fatigue” is real — please offer upfront so I don’t have to ask.

When I need to ask you to go out of your way to make accommodations so that I can attend a holiday event, I often feel as if I am a burden or am imposing on you. If I am coming to your house, it means so much when you give me unsolicited permission to take a break in an empty room if I should need it. Having a quiet space I can excuse myself to when my pain climbs makes such a difference, and I often feel self-conscious asking for that.

5. Just because I’m smiling, doesn’t mean I’m not in pain.

Because of my chronic illness, I have had to learn how to hold space to experience pain and happiness at the same time. Even when I am smiling and laughing, I’m also often experiencing physical pain.

I am making a choice to push through the pain, because spending time together is so important to me, but just because I look happy doesn’t mean my pain is gone. Please understand that carrying this duality is challenging. Please don’t make assumptions about how I feel or invalidate my pain just because you cannot see it.

6. I often feel like I’m not doing, or being enough. I love hearing you tell me that you recognize how hard I am trying!

I feel so supported when you tell me that you see how hard I am trying. Even as I endeavor to honor my energy reserves and limit my activities, this season’s activities take a toll on my body. I show up because I love you, but a lot of the time doing so requires an incredible amount of effort. When you tell me that you see how hard I am trying, I feel so loved and validated.

7. I often feel so isolated; a short text message from you can be a lifeline for me.

Even if we can’t spend much time together physically, it is so special for me when you carve out time to check in with text messages. Sometimes, a simple text conversation feels like my only connection to the outside world. I know you might be busy jumping from one thing to the next this season, but when you take the time to reach out, it means so much to me. Please keep sending them whenever you can!

8. If you want to help, but don’t know what to do, please ask! It is so appreciated.

I know that sometimes it’s hard to know how to help me manage my symptoms. When in doubt, please ask!

It is incredibly supportive to have you say, “What can I do to make the party easier on you?” or, “Is there anything I can do to help make the day more manageable?” Even something more general like, “I’m not sure what you need to get through the season but I really want to help,” makes me feel less alone.

Everyone’s experience of chronic pain is different, and the best forms of support aren’t always obvious or intuitive. Clear communication and open-ended questions can really help navigate this uncertainty.

Invisible illness and chronic pain are complex, layered, and dynamic in the ways they impact almost every aspect of life. Be gentle with yourself and your loved ones as you learn how to communicate about the strong emotions chronic pain can evoke, and gradually weave compassion and kindness into your interactions and conversations.

Getty image by Halfpoint.