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To the Chronic Illness Warrior Missing Another Holiday Event

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The front door closes as your significant other, family or friends head out for another holiday event without you. You’ve known this was coming all day, yet somehow those first few moments after they’ve gone still feel like a punch to the stomach every. single. time.

Suddenly, the whole house seems extra quiet, extra empty. You do a mental count of how many hours you have to fill until they are due back home. If it’s evening, those hours tend to feel longer and longer as they tick by and you become more exhausted. You know the same block of time that feels “blank” for you will be a bustling whirlwind of gathering, celebrating and catching up for the people you love. That’s part of what makes it so daunting. How do you find peace here, when all you want to do is be there?

For you, this blank stretch of time must be filled at home. You don’t have the energy to try and go out and run errands by yourself and your pain is too high anyway. You consider seeing if a friend might want to stop by the house and say hello, but you know that’s just a thought, because physically you aren’t up for visiting at home with anyone either. Lastly, you contemplate trying to call someone, but once again, you know your pain is in too precarious of a place for conversation. A simple phone call could escalate you into a full-blown flare. It is for that exact reason, the inability to put anything extra on your already full plate, that you are home alone while it seems like everyone else is out celebrating.

Noticing the quiet stillness of your home, it hits you all at once — a cascading avalanche of loneliness. The isolation that is often an essential element of caring for a chronically ill body seems to engulf you. In this moment, a stomach-wrenching feeling that life is passing you by is impossible to ignore. It causes panic to bubble up in your chest and fear to run wild.

Thoughts like “is this really my life?” or “what if it never gets better than this?” fill your mind and pull at your heartstrings. It’s hard, sometimes impossible, to keep yourself from imagining and wishing for a different world where you were walking out the door with the people who just left, carefree, happy and free. Because that is the way things should be.

The weight of all of the parties, events, dinners and life happenings you’ve been forced to miss out on due to illness starts to feel overwhelmingly heavy. You know that this is just one night, but you’re feeling the deep hurt of just how many other nights you’ve spent in this exact way too. Soon, tears fill your eyes. It all feels so unfair.

You’re no stranger to being home alone caring for your body. You’re used to managing symptoms most people don’t have to worry about. And it’s likely you’ve even managed to get used to having to miss out on things. But today, and especially over the holidays, missing out feels particularly cruel. In fact, tonight, it feels unbearable, as if there is no way you can keep going on like this.

And so you let yourself cry. You allow yourself to really feel the toll living with and caring for a chronically ill body can demand. You spend so much time putting on a brave face and looking for the positive parts of your world that this emotional release of the darkness you also carry actually feels good.

The darkness is dark, and it is hard. By allowing yourself to feel it, you validate just how painful and crushing it is to go through nights like this. This can happen whether it is the first of such nights, or you have lost count of how many of them there have been over the years.

When you’ve cried and your tears have run dry, your head is likely pounding (no surprise there if you’re also a migraineur). You go to the freezer, put on an ice cap, heat up some tea. And then you shift into the self-preservation and self-care mode you have come to know so well.

You begin to implement all the little tools that help you create calm in your tiny world. You pull on your coziest pj’s, slip into comfy slippers, light a few candles, take whatever medications are necessary, bring snacks and drinks up to your bedside, find your furry companion and finally settle into bed.

A peace washes over you in this place. This is a safe little haven you have created for yourself where you feel held and taken care of. Your heart is still achingly sad, but you are slowly rooting into the knowledge that you’ll get through this, just like you have every other time.

Depending on your mood and pain level, you might watch a movie, do a guided meditation, journal, listen to a podcast or spend the night audiobooking yourself into a different world. You do what you need to do, for you; following your personal recipe for calm and peace that you have been perfecting for a long time now.

Nothing takes away the sting of constantly being the person who can’t go to things, always needs to cancel last minute or leaves every occasion early. Even if the people closest to you understand, it’s still hard for you to accept that for now, you have become that person. You know that isn’t you. You are reliable, social, vivacious, joyful and energetic — but on most days, currently, your health doesn’t allow you to show up in that way.

It’s my most sincere holiday wish that this note finds whoever needs it this holiday season. That it prompts you to give yourself grace and be compassionate with yourself during those lonely times when you aren’t able to participate. Please hold the hurting parts of your heart gently, and allow every bit of pain and fear to be acknowledged.

I won’t tell you that it will get better, or that it won’t always feel like this — because I know that right now, it is this way. It’s OK to recognize how tough it is and how hard you’re trying. It’s OK to give yourself space and permission to sit in the darkness for a bit; to reach out to the part of you that is hurting most and say, “I see you. I know. I understand.”

It wasn’t until I fully acknowledged the darkness of being left out of many of the holiday activities I used to love that I was able to redirect my focus to finding the little flickers of light.

And today, when I look hard enough, I can always, always find them.

I believe it’s always within our power to create a new kind of calm, find ways to be festive and soak up spontaneous moments of joy with a present, open heart. But sometimes, getting to that point means working through difficult feelings and emotions — and that is always, always allowed.

Getty image by Tommaso79.

Originally published: December 17, 2019
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