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How COVID-19 Lockdown With Chronic Illness Reveals My Vulnerability

When I was diagnosed with two chronic pain conditions, I perfected a way of dealing with things alone. Call it suffering in silence, but it’s the truth. I opted not to burden, not to trust, not to ask for help because people could possibly think I was weak for needing it in the first place.

Being immunocompromised isn’t easy as it is. My family, friends and I have always had to take precautions because of the medications I take to keep me alive. Canceled plans fill my life because of unexpected colds, flus and viruses. But right now this feels like I am trapped in more ways than one — in my disease, in my house and in this space.

In just one day I went from spending most of my time alone to sharing the house with two people. I wasn’t unhappy because they were safe and that was the most important thing. But mentally, physically and emotionally it was and still is an adjustment for me.

The truth is there is some shame attached to their constant presence. I understood the things I hid would be in clear sight of the very people who view me as strong and capable. I understood that even though I was thrilled, the anxiety of what it really meant nagged at me.

For so long, almost two years now, my family wasn’t here during the day. They weren’t here to see me fall apart, or cry in pain or curse everything that exists. They weren’t there through hours of silence I learned to crave. They weren’t here through shaky pep talks I learned to give myself when I felt like there was no reason to get out of bed.

That’s not to say they didn’t help me after these events or spans of time. They did and they always do. I believe love heals me in a way medicine might not ever be capable of. They have always dealt with it with me, but did not have to witness it as often as they do now. Sometimes I feel like a freak show on display with a loving audience in the VIP section. I think about all the things they are wondering right now as I struggle through the paranoia and anxiety of what COVID-19 has welcomed into our lives.

Now they are witnesses to what I see as my failure. I’m on full display for all to see (not just them) — this sort of movingly emotional mess, who tries not to spend the day sleeping and even when she does she still can’t move without complaining. Doing, experiencing and living through this in front of everyone is very hard. Having crushing anxiety surrounding COVID-19, plus lupus, is a tinderbox that feels like it is just about ready to explode.

What I have heard the most is to “find something you can come out of this with.” A new skill, a new something.  So I have decided that I am going to come out of it with a new outlook. This can be a learning experience. Maybe it’s not this grand experience that will change the world, but if it changes me and I change the world then the mission is accomplished.

What I am learning is to forgive myself. My family forgives me every day, and I could learn a lot from them and the way they love me. This COVID-19 lockdown is teaching me is to find compassion for myself, especially in places where I expect myself to be strong — whether that has to do with my diseases, mourning and grief, or even fear surrounding this virus and what it means for our future. We are allowed to feel all the complicated emotions that accompany what is happening to us, personally and collectively.

I am allowed to feel.

What I have learned is that it is certainly OK not to be everything to everyone every bit of the time. It’s expected for there to be times when it’s just not OK, not for you and not for those around you. Bad days can happen and they will, especially when we are all in this constant place of what happens now, what happens next?

Right now, maybe it might be best if we pour into ourselves even to the point of overflow, just in case we need a little extra on the days that feel harder. Maybe those of us that can’t find enough air to breathe can learn to feel the wind again. Maybe those of us that itch to be outside can find the patience to think and care about others far and wide. Maybe we can find the time to dance to the music, to flow into spaces that need light and fill them.

Stay well.

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Getty image by Absolutely Frenchy.