Breaking the Chains and Taking Back Control
“But if these years have taught me anything it is this: you can never run away. Not ever. The only way out is in.” — Junot Díaz
I have always been a social person. I need human contact and I have always enjoyed spending time with family and friends, going out, being around other people, and trying new things.
But in December 2019, I was diagnosed with interstitial lung disease that led to pulmonary fibrosis (PF). Two months later, the COVID-19 pandemic happened, and I felt a part of me had stopped enjoying life. Living with PF during COVID-19? It was bad enough to know I would have to live with a rare disease, and worse to know that having this illness could make me even more vulnerable to a deadly virus that was rapidly spreading around the world.
Maybe I didn’t have enough time to accept my diagnosis when the pandemic started. When the world changed, I changed too.
And when my mother died from COVID-19, I began to fear that I could succumb to this virus, too.
I have been afraid to leave my home. Walking long distances stresses me out. Going to the grocery store gives me so much anxiety that I order online and use the curbside pickup. I can’t even imagine sitting down to eat in a restaurant, even with vaccinations and social distancing. I have not been to the mall. I made a personal protective equipment (PPE) kit and took it with me everywhere. It seemed like living with PF during COVID-19 would be impossible to do.
Does not compute
I have felt like a prisoner.
And then my laptop needed to be repaired. It was my only remaining link to the outside world. I couldn’t possibly not have it after everything I had been through.
The problem was that the closest repair service was inside a shopping mall. I was terrified at the thought of having to take it in.
But my daughter drove me there and dropped me off at the entrance closest to the repair shop while she looked for a parking spot. But even there, as people approached to go into the mall, the anxiety began to creep in. It felt like waves of people were coming my way from all directions. I started to sweat, and my heart seemed as if it would erupt from my chest.
When we got into the mall, I walked close to the wall, trying to stay away from people. I let my daughter lead the way, but I saw that there was a long line to get into the store. Fortunately, we had an appointment, so a customer service representative ushered us into the store, away from the crowd.
I still felt like a puddle of water, and I kept telling myself to take deep breaths and think of a happy place. The appointment finished up soon enough, but the walk back to the car felt like a mile.
Breaking free
I survived my trip to the mall. But it made me realize how fearful I had become and that I needed to conquer my fears. I am living with PF during COVID-19, but I can take steps to protect myself. And I can also take baby steps toward restoring my life.
So, I am making small changes.
I have begun to take short walks. I go to the grocery store to get just a few items. I continue to make my own PPE whenever I go out. This helps me feel like I’m doing everything I can to be safe. I have begun to talk to my neighbors, but I wear a mask and keep myself at a distance. And I have begun to keep a journal of my progress.
This has not been an easy year and a half, and talking about this embarrasses me. I don’t like feeling like I’m not in control of my emotions. I want to be the person I was before, the person who enjoyed her life. I don’t want to be a prisoner of fear.
I’m ready to begin to break these chains and take back my life.
***
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
About the Author
Comments
Ginny Auserehl
Much of this could be my story. I also tend to be angry at anti maskers and anti vaxers. It is difficult enough adjusting to my new normal without this added stress.
Ann Reynoso
Thank you Ginny for reading my column. I have trying to be as honest as possible about my journey. It is difficult, but I have been trying new ways to overcome my hang-ups. Stay strong.
Susan Fugleberg
Junot,
I am sorry that your diagnosis happened so close to the pandemic. It makes everything so much more difficult. If you have not joined a support group yet, check with the Pulmonary Fibrosis Foundation for a list of support groups. They are all meeting online now. My husband who has IPF and I attend three different groups and get a lot of excellent information from professional speakers as well as support, encouragement, and friendship from other patients and caregivers. You will find people who will help you as ypu find your way through this. Susan
Ann Reynoso
Hi Susan,
So happy you read my column. I have recently joined a support group. It has been very helpful and encouraging. I definitely am positive about finding my way.
Hans Fink
Sorry Ann that you felt this way, but it is an unreasonable fear.
I am always positive about myself & never give in to any fear.
Remember: "There is nothing to fear, except fear itself" (Elanor Roosevelt)
Ann Reynoso
Hello Hans,
I really like that quote from Eleanor Roosevelt. I am glad you read my column. Sometimes I need that reassurance that all should not be negative. I always tell my students, "Spread the love and Positivity." Now it is time for me to follow my own advice.