To my healthy friends,
I felt the need to write this post today to really document the state of the new reality we are living in for those who may not be to this point yet. Within the last few weeks, things have changed drastically in Ohio and many other parts of America and the world.
I will be honest, I feel like most people probably thought I was frantic and overreacting when the first talk of coronavirus made the news. Yet, as someone with a chronic illness and who is immunocompromised, I knew the seriousness of the situation. Having lupus and facing the possibility of a novel virus that could potentially kill me is terrifying.
I have found it somewhat difficult for some friends to understand the seriousness of this virus. I try to remember they are still young and healthy and how when I was the same, I thought I was invincible. But, my how my life has changed dramatically since my lupus diagnosis and especially since my recent kidney cancer diagnosis.
No one really seemed to care about the virus that was killing thousands across the globe, it wasn’t in our neck of the woods. It was some foreign virus that wasn’t our issue. I heard it was being hyped up by the media, that it was a government conspiracy.
Some people couldn’t believe that a sickness could kill so many people, be so contagious, or cause an utter disruption to their ‘normal’ lives. It has to be a conspiracy right? Who in their right mind would not allow sports to continue? What states would just shut down schools? What countries would purposely sustain economic losses?
You see, those of us with chronic health issues have been living a life of terror, panic, and isolation. This is nothing new for us. We will probably fare better than our healthy friends and family when it comes to mentally processing being stuck at home, unable to work, and not able to go to all the social events healthy people normally do.
Unfortunately, this is the normal life of many people living with a chronic illness. We have to constantly watch being around people who are sick. We panic every time we come down with a cold that leads to wheezing in our chests and are constantly scared of serious infections every time we get a fever.
I know you may think that we look paranoid from the outside, but the fact is a simple cold can cause us to develop pneumonia or worse. This is the reason I get so aggravated when I see friends I love have not been taken this seriously.
Part of me wants to stand up and scream, but the other part of me wants to keep preaching advocacy for chronic illness warriors. I feel as though the terrible experience in living a life with a chronic illness has prepared me for this pandemic. I feel if anything good can come from living a life of pain and isolation, it’s always worth pursuing.
As someone with an autoimmune disease, many of us are used to not being able to work or having to work from home. I am used to being stuck at home in isolation from friends and family. I am used to being able to financially contribute to my family with only a part-time paycheck. Finances were stressful as a chronic illness warrior before COVID-19 and will be stressful for many of us after as well.
Social events, ehh, most of you already know that it’s very rare to find me at a social event with a large group of people these days. This is usually because either my lupus is flaring, I don’t want to catch anything, or even my sensory overload and social anxiety that has become an issue in the past few years. Large groups of people sometimes overwhelm me.
Many people are dealing with depression, anxiety, and loneliness right now. As a chronic illness warrior and as your friend, know that I get it. I get what crying on the bathroom floor feels like when you have no control over the bills that are piling up or the realization that you can’t teach homeschooling perfectly like other parents. I get what its like to live in isolation with nothing but your thoughts to keep you company. I get what its like to ache for a real connection and know that acting on it is not worth the risk.
I get what its like to live in stretchy sweats for days on end, without a thought about putting on makeup or dressing up like I used to. I get it when you look in the mirror and are shocked by the reflection staring back at you. I get the anxious feeling from being trapped inside your home and the social anxiety some of you may be developing right now and not even know it.
I write this letter not to be critical or angry at my friends who didn’t get why I was so worried about this virus long before it came to our shores. I am writing this letter because I want you to know that I get it. I get what you are feeling right now and I want you to know this: I got you.
If you are suffering from depression, anxiety, or loneliness; know that you are not alone. Millions of chronic illness warriors are living amongst you as neighbors, friends, and colleagues. If you need someone to talk to, please reach out to me. Send me a message online or let’s video chat together. I love and care about you and want you to know that you are worthy, even though it may be difficult to see among the chaos. Always remember, we fight together!