Remember me after COVID-19

Dear non-disabled friends, family, and co-workers,

We need to have this talk while your emotions are still raw – while you’re restless and missing your old life; while you’re anxious about your finances; while you’re worried you might die.

This pandemic has been challenging for me, but not in the ways that it is challenging for you. In many ways, I am actually thriving. For the first time in four years, my job is now accessible. My co-workers don’t forget to include me in staff meetings and I don’t have to worry about life-threatening allergic reactions. Without a commute, I finally have enough energy to make dinner every day. My body no longer screams at night.

Many stores that were previously inaccessible to me are now offering curbside pickup and free shipping. Grocers are offering special hours and facilitating social distancing, so I can shop safely. Even my doctor is offering telemedicine. The masks I wear in public are cool now.

The outreach and support I’m receiving is phenomenal. Every day, multiple friends and acquaintances offer their help. They ask me how I am doing and what I’ve been up to. Community members set up a Facebook group to help neighbors like me with errands. Organizations are offering free food, online courses, and mental health resources.

So why I am boiling with resentment?

Because your entire life has changed for the worse and you want to talk about it. You want to vent about the challenges of self-isolation and the fear of illness. You’re struggling to adapt to the uncertainty.

All of your feelings are valid.

But so were mine.

Five years ago, my life was similarly turned upside down by illness. I became confined to about 10 buildings due to severe reactions to fragrances and other chemicals. In other words, no shopping malls, air travel, or dinners with friends.

When I got a disability parking permit, one friend suggested I take advantage of all the places with tough parking. What I really wanted was for her to visit or at least call, but she never did. If she had, she would have realized I could barely walk. I lost many friends because they thought my lifestyle was a choice.

While medical debt threatened my financial stability, I almost lost my job too. My office was not safe, but my manager (at the time) told me working from home wasn’t feasible. After months of stressful HR meetings and medical documentation, I convinced my manager to allow me to work from home one day per week, even though I needed more. It has not caused any performance issues in the past four years.

I will never forget my first birthday in isolation, the year I didn’t receive a single card and no one visited. When I needed support the most, people forgot me. People argued that if I wanted to be included I would need to lower my accommodation expectations. Sometimes it’s just easier to spend Christmas alone.

This pandemic not only validated my grief, but confirmed that I’ve been unnecessarily suffering, because people were unwilling to adapt. 

I finally feel like I belong in society, and I fear that will be taken away. I feel an urgency to share my story and build empathy. My body depends on it.

How can we use these terrible experiences to build a kinder world together?

I know we are capable.

12 thoughts on “Remember me after COVID-19

  1. Oh wow! This speaks volumes for me!!! You said it beautifully! Thank you for this…I’m sharing it with the world!!

  2. Well said. Isolation is something I adapted to years ago, minimizing my social contact, shopping, and other activities that are now restricted for the rest of the world. You put words to what I’ve been feeling through this all. The world is learning first-hand our reality.

  3. Perfectly sums up my experiences and my feelings. I hope I have the courage to give this to my boss when full time work from home ends with the end of the crisis. Thank you for expressing these important ideas.

  4. I love this and your story!! I can’t wait until you can share your documentary with us!!
    I still need a mast cell specialist and yes someone to test me for whalers Danos and or a form of connective tissue disorder as well as pots and dysautonomia!!! Well technically I think pots is a dysautonomia… anyway been living this way 2.5 years and really looking forward to healing in 2021 with more quality of life!!! The toughest part of my mast cell and other undiagnosed problems is one of them caused me to be legally blind because of the nerve damage in my optical nerve for which there is no correction … so I live in fear of allergic reactions and not being able to drive myself and live rural so 911 not super fast… so that sometimes holds me back from progress so again thank you thank you for sharing being “out of the darkness”. So happy!!!!! You inspire all of us and thank you for taking your precious tone to to that!!

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