Meaningful, empathetic, and kind replies offer hope: Meet @diverdown1

JOHN: What brought you to Mayo Clinic Connect? 

@diverdown1: I got COVID in January and March of 2022. I was sick, but the virus seemed to last about a week both times. I woke up on a Saturday morning in June of 2022 and was very sick. It felt as if I had been poisoned. I thought maybe I had COVID or the flu but I have never experienced the way I felt that morning. I went to see my doctor and the labs were run. I did not have COVID or the flu, but my anti-nuclear antigen titer was flagged and showed that the Epstein Barr virus was reactivated. I was referred to a rheumatologist for more blood work. She tested me for almost all autoimmune disorders; rheumatoid arthritis (which she thought I had), HIV, Sjogren's, Grave’s disease, Lyme disease, lupus. None were positive. 

I told her I thought it was long COVID, having done my own research. In 2022, this was so new that most doctors knew nothing about it. This virus runs through the body and mimics other autoimmune diseases. I wake up most days with fatigue and, depending on my activities the day before, I have post-exertion malaise. I have terrible brain fog and need to write everything down.  

I started graduate school in 2021 for a Master of Social Work, an online program at the University of Tennessee. They have been wonderful working with me to accommodate my health issues. 

I am also a recovering alcoholic of 7 years. I have battled addiction from the age of 14. I found my partner of 28 years dead in our house in December of 2023. He died from alcoholism. So, I have experienced a lot of trauma and grief in the last several years not only from long COVID but other life experiences. I will say that long COVID has turned my life upside down. I found that connecting with others on Mayo Clinic Connect helped me feel less isolated and to understand a lot of the issues I am facing.

JOHN: What motivates you to take part in the community?

@diverdown1: I feel like members help me and I also hope to help others in the community. Connection is crucial in life and the feeling of being connected is a wonderful thing.

 JOHN: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?

@diverdown1: I can remain anonymous if I want and I can ask questions, answer questions, and just take part. Most of the people sharing are making themselves vulnerable, it feels good to help and to connect. Even though the connection is virtual, when people are unable to get out and socialize, reading and commenting on others’ situations helps me and hopefully the other people in the groups.

JOHN: What support groups do you participate in?

@diverdown1: I participate in the Autoimmune Diseases, Depression and Anxiety, Just want to Talk, Post COVID Recovery & COVID-19, Mental Health and Addiction & Recovery groups.

JOHN: Tell us about a meaningful moment on Mayo Clinic Connect.

@diverdown1: As a recovering alcoholic and addict, I post in that group quite a bit as I have experienced both sides of addiction. I am recovering, went to rehab the first time at age 14, 19, and 30, and then finally got sober December 16, 2017. I lost my partner to this disease, and I know what it feels like to be powerless watching someone you love continue to slowly commit suicide by drinking or using drugs. I relate to a lot of the people in that group. I also like to try and provide hope for all of us and remind myself and others the importance of staying in the present moment. Fear of tomorrow is something that I encounter, and I remind myself that I do not have any idea what tomorrow will bring. People’s replies to some of my comments have been meaningful, empathetic, and kind. That feels hopeful.

JOHN: What surprised you the most about Mayo Clinic Connect?

@diverdown1: I was surprised that Mayo Clinic Connect even existed, especially giving a space to talk with other people with long COVID as the condition was and is so isolating. There are people that do not believe it is even real. There are so many people in that group that are experiencing the same things, not just physically, but emotionally as well.

JOHN: What energizes you, or how do you find balance in your life?

@diverdown1: I love my dogs, and I have a cat. I love watching the birds come in the morning to the feeder. My graduate studies are also energizing as I know that social work is a field that can help people in many types of situations. I believe I am here for a reason.

JOHN: Tell us about your favorite pastime or activity.

@diverdown1: My favorite activities include being outside. I am a scuba diver and that is my passion, however with long COVID, I would need to get a doctor’s approval now. I was an assistant instructor and dive master and wanted to make a living doing scuba at one point in my life. My last relapse destroyed that, at least at the time. I love the ocean and camping. I also want to change the way people with substance use disorder and mental health issues are put away in jail instead of being treated for these disorders. I watch a lot of real crime stories and I want to advocate for those folks that need help and not be put in jail.

JOHN: What do you love about where you live or vacation?

@diverdown1: I love the ocean and go to Cocoa Beach every year for a week. I want to eventually move to that area or somewhere near the ocean. My dream would be to live in Saint John, U.S. Virgin Islands.

JOHN: Do you have a favorite quote, life motto or personal mantra?

@diverdown1:

Flow with whatever may happen and let your mind be free;

Stay centered by accepting whatever you are doing.

This is the ultimate. ~Chuang Tsu

JOHN: Puppies or kittens?

@diverdown1: I love animals. I used to rescue and foster many dogs until they found a home. Animals can provide unconditional love whereas human beings may not have that capability.

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