COVID-19 Is A Chance to Walk In A Cancer Patient’s Uncomfortable Shoes

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Written by AFC Community | May 5, 2020

Sarah was diagnosed with myxoid liposarcoma in 2017 the day before her 30th birthday. She underwent 3 surgeries and 25 rounds of radiation. She is now monitored every 3 months for new tumor growth. Sarah makes the most of these three-month blocks by traveling, opening her own business, and competing as a Para-athlete. Sarah is a January 2020 Ignite Experience alum. The Ignite Experience is a free, 10-week virtual program that helps participants find connection, growth, and belonging. You can explore more about the program here. This post is the third in a series written by alumni of the first Ignite Experience, who wanted to share their personal stories as they explored concepts of the program. To read the first post, click here. To read the second post, click here.

I have always been an anxious person, but over the last month, my lack of anxiety has surprised me.  As the world has entered into a crazy time, I somehow find myself feeling less anxious. Maybe it is the medication increase from my psychiatrist, but I think there is more to it. I think that the last three years have been preparing me for this event.

I know you are probably thinking I am crazy. How can I be prepared for a pandemic to spread around the world?, But when I take a step back and think, the feelings many are experiencing now have become my normal.

I’ll start with the whole idea of social distancing. Since my diagnosis with cancer, this principle has been a part of my daily life–just without a title. Leading up to my diagnosis, I caught every cold and flu that passed within a 20-foot radius of myself. The winter I was diagnosed, I was always sick. It even became a joke at work as we waited to see what I caught next. No matter how much I washed my hands or tried to be careful, I caught something. 

Once I finally got the cancer diagnosis, it made sense. I naturally went into a panic,  similar to what the world is experiencing now. I have spent the last three years quarantining myself away from others with symptoms of anything, using excessive hand washing routines, trying not to touch my face or mouth, and so much more. Why? Well, the reality is my immune system is bad and I am likely to catch it all. My body is so busy fighting cancer that it doesn’t notice the other foreign invaders. This uncertainty has become my normal. It is like I live in the land of exposure therapy where three years of anxiety about catching the next illness has made me accept the current situation as normal. Since we are on the topic of uncertainty, I recognize the big worries that many are newly experiencing since I have been battling them for a couple of years. The fear of what is coming, when it is coming, and what will happen. The reality is that there are no answers and we are living day to day/ From press conference to press conference. Waiting on medical tests and reports to see what comes next. 

As humans, we like answers and are used to getting them. When they aren’t available it causes stress and worry. It causes crazy things like stockpiling toilet paper and bottled water. We like things that are linear and predictable. We thrive on routine and a sense of normalcy.  All of these things have been flipped upside down and we feel like we have lost control. For me, this is my normal life. I live in three-month blocks, waiting on results and reports to decide what comes next. My reality is that every three months, I get a yes or no on if I can continue going on with “normal” life or if I am back into treatment. I live with a lot of uncertainty. As the world fears a pandemic around them, I fear one within me. When will my body attack? How bad will it be? What comes next? When will life return to “normal”? The feelings people are now experiencing are, as some would say, a chance for others to “walk in my shoes.” For once, I am less anxious than many of the people around me, and I have taken some comfort in it. 

Don’t get me wrong, I am worried about COVID-19. I just don’t feel that much more worried than I normally do about a cold or flu. Maybe I should be since I fall into the category of people this could be bad for.  But right now, I feel safer as I know more people are actually washing their hands, staying home when sick, and taking precautions. We live in a world where these common-sense things get forgotten too often. We have signs in restaurant bathrooms reminding staff to wash hands. We have people who are looked at as dedicated and strong for going to work even while feeling under the weather. We try to think that we are all superhuman and that we will be fine.. as if the bad stuff only happens to others.

I just want to take a moment to welcome you all to my reality and offer you the chance to walk in my shoes. 

My uncomfortable shoes are full of annoying little rocks making me feel anxious, uncertain, and scared. My shoes aren’t that reliable and could break at any time, causing a change in the path I walk on. 

This is a chance for people to sit back and think about those living with chronic conditions who experience anxiety and uncertainty as part of normal life. Who live in periods between medical tests just waiting to be told there would be another disruption to their life and plans. Think of the disappointment you feel with everything that has been canceled over the next month. Now imagine a life where this disappointment becomes a permanent fixture. You are afraid to make big and exciting plans because you have had to cancel them one too many times. Canceled trips due to a new treatment or change of medication, canceled plans with friends due to them having a cold and you “social distancing” from them.

Eventually, this pandemic will subside and life will return to normal for most. Life will get back on a linear path. People will return to their mundane routines from week to week that make them feel safe. Even the grocery stores will return to having toilet paper on the shelves. When this happens, remember the feelings and emotions you are having now. Take the time to reflect on them when you talk to someone with a chronic illness who has to cancel or is afraid to commit too far in advance. Remember them when you tell the person to just move on. Most importantly, remember them so that those people feel less alone.

 

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Comment (1)
  • Sonnetta Jones • May 11, 2020

    Thank you so much for sharing this Sarah. I know people want things to go back to normal and I pray for them because this pandemic has changed us. I remember telling someone this very thing about how people with chronic illnesses live with this every day and not to tell them to get over it.

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