The Other Health Issue Happening Now

I need to tell you a story. It’s one that I don’t want to share necessarily, but it’s time.

I’ve struggled with anxiety for years. If you have lived through the events I have as a parent of a child with special and medical needs, you would understand how it all came about. I’ll give you a snippet of our journey and explain why it’s relevant for today.

My 15-year-old with Down syndrome, twice repaired AV canal heart defect, and Wolff-Parkinson White syndrome (twice ablated) struggled for years with her health. I remember the first time Jaycee was hospitalized for pneumonia when she was 1. I didn’t understand the different levels of respiratory support and how the hospital system worked. Within a few years, I would gain a full education. I would come to know the stats for heart rate and oxygen saturation that would result in a hospital admission. I discovered when a nasal cannula, high-flow oxygen, c-pap, and ventilator would all be needed as the lungs worsened.

For years, respiratory viruses ruthlessly attacked my daughter’s body. A simple cold virus (rhinovirus) escalated to Jaycee needing a ventilator not once but twice. Have you seen someone on a ventilator? The sounds and alarms from it are jarring. The sound of her coughing and being suctioned was something I wish I could erase from my memory. Spending weeks in the hospital not knowing what the next hour would bring was stress I cannot adequately explain.

Respiratory event after respiratory event with Jaycee caused problems for me. I was stressed to the max. Anxiety over her health, fear of her being sick, and exhaustion of her care changed me in an unexpected way. Keeping her healthy consumed my life. For example, there were a few times in church when the person behind us would cough and my mind would race. I viewed circumstances like that as a real threat to my daughter’s health. My mind would supply me with a hundred ways in which an encounter like that would be detrimental for Jaycee. Keeping her healthy affected all of our decisions and was at the forefront of everything we did. Despite our best efforts, she struggled with normal colds and viruses. Every illness exacerbated the anxiety I felt. I took it upon myself to somehow keep her healthy. It was an impossible feat given the condition of her lungs. 

Do you know what years of ignored anxiety does to a person? I know what it did to me. I became anxious all the time. Literally all the time. I never had peace. Even when there was a reprieve from the illnesses, my mind would keep me in a state of anxiousness. I had lived with high stress and adrenalin for so long that I struggled to cope in “normal” life. I was jumpy too. If a family member entered a room I was in, I would jump like someone had intentionally tried to scare me. At one point, my body tensed up to the point that my left arm became numb. Muscle aches, jaw clenching, teeth grinding, and exhaustion were all normal to me. It was only through medication and counseling that I was able to get some control of the situation.

For the past 2 years, Jaycee has been exceptionally healthy thanks to Mayo Clinic giving her a successful treatment plan for her lung conditions previously not identified. These two years without illnesses requiring the hospital have been wonderful. Still, the anxiousness and stress have not gone away. My mind was trained to live that way for years, and I have to make a conscious effort to keep those things at bay even now. I find things to stress about when there is absolutely nothing stressful. Intrusive thoughts create stress for me, and I have to work hard to identify them to decrease the anxiety. I always thought if Jaycee’s health would be better, my mental health would be better. It wasn’t that easy. I had created a monster in my mind and didn’t know I had no control of it.

So you have to understand that this pandemic has caused me distress at times. When the virus first hit and the lockdown started, I was terrified of COVID-19. I had people in my life telling me to fear it because Jaycee would be detrimentally affected by it. Fear was easy to find all around me, and it was fuel for my anxiety. In the beginning, I stayed home and dreaded leaving my house. I worked from home during that time, so I only left for food or medicine. Each time I left the house, I was anxious. My heart would race just being out and near people. Seeing people in gloves and masks pouring out sanitizer every five seconds made me more anxious. (People did a lot of strange stuff in public during those first few months.) The logical part of my brain could not compete with the anxiety that already had a strong root in my life. Worse yet, I was surely projecting anxiety onto my kids since they were typically with me.

At first, my solution to decrease the anxiety was to send my husband, who was home full time as well. He reported he had no qualms about going out in public. Even though we have had the same history with my daughter, he never had the anxiety issues I did.

Little by little, I rejoined society mainly because being home all the time was horrible for me. For a while, I had anxiety every time I left the house. I didn’t want to get the virus. I didn’t want to make a mistake that would affect my daughter. Being around too many people would truly distress me. After church one Sunday, I asked my husband if he enjoyed the service because I did not. I could not get past the fact that I was in a group of people. The fear and anxiety were constantly eating at me. My husband said he was fine. Two people sitting side by side in a church and experiencing two different things. One struggles with anxiety, and one does not.

At this point, I had to decide what to do. I could allow the anxiety to rule my life and control what I did. The other option would be to push myself to have a life outside the house while taking some precautions. The reality was that my husband and I need to work. We couldn’t stay locked in our homes forever. For me, the more I carried on with normal life activities, the better I did. You cannot live your life being controlled by fear, especially as a person of faith.

I guess I should take a moment to declare that I do believe the virus is real and can be life-threatening for some. However, I also feel fear is heavily pushed upon us on the news and social media, and that level of fear is not healthy for people with my history. The longer the virus lingered, I assumed at some point we would have a run in with it.

In January, that moment occurred. My husband and both children were positive for the virus. We aren’t sure where we got it, and it doesn't matter anyway. I was incredibly stressed when Jaycee tested positive. A few months prior, two of my close family members were in the hospital with COVID-19, so of course that was on my mind. I don’t think I slept much for about a week as I felt the need to check on her often. We intervened quickly for Jaycee, and we were blessed that she came through it relatively easily. The really odd thing was that I never got the virus. I tested negative twice and later had a negative antibody test. I didn’t avoid my family at all, so the mystery of how this virus acts continues. I ended up getting the vaccine so I had some level of protection to be on par with my family.

After my family recovered, we made a list of things we wanted to do now that the virus wasn’t an immediate factor. We all had a certain level of immunity, and we were going to take advantage of it. We looked forward to the activities on the list. We all needed to feel normalcy. We didn’t throw caution to the wind, but some people may say that we did. The intense level of anxiety that stemmed from trying to avoid a germ no one can see was no longer there, and it felt great. I hadn’t realized the toll it had taken on me until that burden was removed.  

I know this post will bring out lots of opinions, but I want to stress one point. Don’t play with anxiety. If avoiding the virus at all costs is giving you stress and anxiety, it is not healthy. You are accepting one illness for another. You may think that you will be able to go back to normal patterns of thinking when this is all over (if it ever is), and I want to warn you that it may not happen.

It’s important to recognize the impact stress and anxiety may be having in your life. I’ve described what happened to me, but the symptoms for you may be different. You may want to look at common signs of anxiety. This article on anxiety related to COVID-19 is a good read too.