The Overlapping Emotions of Chronic Illness and the Pandemic

Navigating the “COVID-19 lifestyle” and it’s ever changing restrictions in a body that’s also living with chronic illness has been emotionally confusing.

The precautions we’ve needed to take to keep ourselves, our loved ones and our families safe have relieved some of the pressure that exists from lacking the stamina or capability to engage and “keep up” with “normal” life.

A lesson I’ve had to learn over and over again in my own chronic illness journey is how to navigate being forced to constantly take “stock” of my energy levels.

Before committing to anything (a quick phone call, a shower or an errand out of the house), I’ve had to get used to checking in with my body and assess how many “spoons” it will cost me (chronic illness lingo for the fluctuating, finite amount of energy you have in a 24 hour period).

It’s a delicate, and often exhausting exercise: trying to figure out exactly what I can get done in any given day, hour or moment without pushing my body past its breaking point.

Many days, there are long lists of activities, to-do’s or outings that simply have to wait, that I don’t have the “spoons” to complete.

Though I still “count my spoons” most days, the exhaustion of wanting and trying to “keep up” with my peers — but never being able to quite hit the mark — hasn’t weighed as heavily on me while everyone else has been staying home too.

A few weeks ago I found myself — almost hesitantly, as if asking for permission — writing in my journal…

“… it doesn’t make you a ‘bad’ person to notice and be aware of the ways COVID restrictions have supported, even eased, certain aspects of your life with chronic illness…”

The words came out of me with a sigh of relief, and a pinch of guilt.

Logically, I could see their truth. Emotionally, I was torn. It triggered a sensitive place of tension in me; one where I’ve held deep worry and concern about what it will feel like when the rest of the world goes back to “normal” — and mine does not. The daily limitations I live with are “personal health-based” rather than “social pandemic based,” and will still be there once the pandemic is under control.

As I sat in this place of difficult, overlapping emotions, I realized how often I’ve felt left out of widespread conversations about longing for small freedoms that were “lost” to pandemic restrictions.

When others speak of wanting things to go back to “normal” — with things like happy hours, restaurants being open for dining in, music festivals, worry free travel, or large gatherings with family and friends — I can’t help but notice how many of those freedoms have already been “lost” to me for years due to my chronic conditions.

I’ve experienced discomfort when my friends have talked about how terrible it is to be stuck at home, or how they’re so bored, in text conversations; giving little to no acknowledgement what a big part of my daily reality those things have been for many years. Except with the addition of unpredictable symptoms and physical pain.

I’ve felt internal sadness as I’ve nodded along in conversations with peers, agreeing that I can’t wait for “things to go back to normal …” While part of me aches with the knowing that my ability to partake in those “normal freedoms” will not be restored solely by the lifting of pandemic related restrictions.

Through journaling and diving deeper into these emotions with kindness and curiosity, I came up with a series of “permission slips” for myself to help navigate this unfamiliar, tender, territory with more ease and compassion.

I thought I’d share them with you, too, in case your mind has been straddling the tightrope between deep concern and care for your country (and the entire globe) and your own personal health challenges and well-being.

Permission slips to hold gentle, loving space for both your personal chronic illness journey and the global COVID-19 journey:

• You are allowed to want an end to this tragic pandemic with your whole heart and experience emotions of sadness or worry about how it might further isolate or complicate your life with chronic illness.

• You can appreciate the ways COVID restrictions have relieved pressure in your life and want things to go back to “normal” for the greater good.

• You can experience emotions of worry about what it will feel like when the world around you starts to “celebrate returning to normal,” aware that your circumstances will stay mostly the same — and want the “normal” That your loved ones miss so desperately to return

• You can feel collective optimism and personal grief at the exact same time.

If any of these” permission slips” resonate deeply in your soul, put your hand on your heart, and take a moment to sit with the swirl of such heavy emotions.

Pause, maybe even close your eyes, and gently hold space and grace for whatever is coming up for you. Noting that no feeling is “wrong”, it just is what it is.

Inhale, it’s OK.

Exhale, you’re OK.

Inhale, it’s allowed.

Exhale, you’re allowed.

There is no “right” or “wrong” way to feel about the way “COVID lifestyle” changes have impacted your day-to-day management of chronic illness.

Often, paradoxical truths can exist side by side. You do not need to feel guilty if you find yourself holding gratitude or relief in one hand and sadness or anxiety in the other. If there is one “right” thing to do: it’s to approach yourself with relentless compassion.

Sending you endless kindness as we continue on through the COVID-19 chapter of our story and venture further into all that will unfold in 2021.

Please know that it is a lot to carry, process and manage — and that through it all, your own gentleness toward your emotions and thoughts is your superpower.

Be ever so kind with yourself as you make your way, day by day. And remember, that in all of these complex feelings, you are not alone.