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The Irreplaceable Lessons I've Learned After COVID-19 Led to My Lupus Diagnosis

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The last two years have been challenging. It’s been full of countless missed events, unexplained fevers, exhaustion, pleural effusion, and iron transfusions.

It’s been a grueling journey since I contracted COVID-19 in February of 2021. Two long years of worrying about my health. Months of wondering if I’ll ever feel like myself again. Days of wondering when my husband will eventually get tired of attending events solo because I’m too exhausted to go with him. What I want people to understand is that I was the fun one prior to having COVID-19 and being diagnosed with lupus. I could go on and on about how crappy this is. I want people to understand what a difficult journey this has been for me, my family, and possibly others living with lupus or other autoimmune diseases.

On May 12, 2022 with my husband by my side, I was officially diagnosed with lupus. At that exact moment I felt relief, fear, terror, and anger. I was told that like other patients who had a tough battle with COVID-19, the virus started to affect my immune system.

My life has not been easy since having COVID-19, but I am so thankful to be here. To be totally honest, I feel enraged when people still compare having COVID-19 to getting the flu. I don’t know about you, but I have never gone from being completely healthy after a round of the flu to discovering I have lupus a year later. They say ignorance is bliss, and I envy the people who still think COVID-19 is like the flu. How lucky they are to not have spent the past two years of their lives in and out of doctor appointments and missing out on life as they once knew it.

Some of the people closest to me still just don’t seem to understand my life with lupus after having COVID-19. I am starting to think they probably never will. I am quite certain some people probably think I’m just “being dramatic.” It may be difficult to understand how I can bike five to eight miles daily, but my entire body feels as if it’s on fire. If it rains, my pain is off the charts. On the outside, I look “healthy,” but there are days when I feel as if my body hates me. When the pain is totally unbearable, there are mornings when my legs give out as I get out of bed. It is difficult to grasp that I’m sick.

Sometimes it’s difficult for me to fully understand what is happening too. I keep thinking of how I was healthy before this all happened, and now, some days, all I want to do is sleep. I show what I want you to see on social media, but I wake up every morning unable to see because I have dry eyes so intense it looks like I have been sobbing. This lasts for much of my morning. I take eye drops four times a day. Sometimes they work, but other days, I’m not as fortunate. My legs and ankles often hurt so badly that there are days when I just want to lay in bed and cry. Sometimes I even get a rash on my face that looks like a large injury. And don’t even get me started on my Raynaud’s syndrome. For no particular reason — and even in the extreme heat of the summer — my fingers and toes turn white without warning. When my body flares, I feel as if I have no control over what is happening.

The day I received my official diagnosis, Earth stopped spinning for a moment. I only remember two things: hearing “You have lupus” and then hearing the doctor saying, “How is your hair?” Call me vain if you want, but I’m not as cute as Eleven from “Stranger Things,” and I’m not ready to part with my hair yet. Instantly, I started to feel sick, and I was sure I was going to pass out or puke from that question. I answered her, “Fine, how’s yours?” Fortunately, she laughed and told me how lupus is different for everyone, and it could affect my hair.

My husband and I were told a bunch of other things about my lupus, but to be honest, I was really stuck on the hair thing. I felt as if Lupus had already taken so much from me, and now it could take my hair too. None of this seemed fair. I was enraged, sad, and terrified.

The past two years leading up to my diagnosis have taught me so much about myself and the people around me. I have learned who my real friends and family are. I have gained and lost relationships. I think many of us who have chronic illnesses may shed some relationships and that’s OK. The people I lost never really mattered — they were put in my path to show us how not to behave. If people can’t truly understand the depths of your illness, it’s OK. We’re not pizza — we can’t please everyone!

I have also met some incredible people — people who are full of empathy, kindness, and love. Those are my people — the people with whom I choose to surround myself. This disease is showing me that my life is too short to waste it on anyone who does not value or appreciate me. This includes the “sick me” and the “healthy me.” I have quickly learned that it’s OK  to ask for help. I also recognize that on the outside, I look “fine” and again, some people will never “get it.”

The author, a woman with reddish-brown hair, stands outside and holds onto a rail while wearing a black dress.

Two years ago, I sat in the emergency room with my husband with a pulmonary effusion that appeared out of nowhere. It was absolutely terrifying. A few weeks later, I had to accept that I could not host Thanksgiving. I was too weak — I could barely make it up a flight of steps without the help of my husband. Admitting that I couldn’t host one of my favorite holidays was extremely difficult for me. It quickly showed me who and what mattered in life. Big, fancy holidays are fun, but the people who are with you for the long haul — the people who are your candle in the darkness — are what really matters. These people love all of you — not just the “fun” you but also the version of you that you may choose to lock away from others out of fear of rejection. These are your people.

The lessons I am learning are irreplaceable. Many of them are lessons I learned during my dad’s cancer journey and then after his death, but now I’m getting a “refresher course,” and it’s even more personal. Lupus is the worst thing that has ever happened to me, but it is also one of the reasons why I am so thankful to be alive. It is the reason why I thank God every single morning for giving me another day with the people I love. Lupus is going to be just one chapter in my life — not the whole story.

Image via contributor.

Originally published: August 23, 2022
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