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Being sick is the worst. But being sick when you have a chronic illness is so much scarier than it ever used to be before I developed rheumatoid arthritis, axial spondyloarthritis, fibromyalgia, neuropathy, Raynaud’s and more chronic conditions.
When news about the new strain of coronavirus spreading around the world and in the U.S. starting ramping up, I began watching closely and intensely.
In my head I began ticking off all the risk checkboxes present in my life. These include my biologic and steroid medications (which make me more susceptible to infections), asthma, and having bronchitis in the last year. Then there’s the fact that I often cannot tell I am sick until I am much further along because I live with chronic pain, fatigue, migraine, etc.
I know and understand the basic lack of hygiene habits many people have. I have been in bathrooms, watched someone walk in, use the restroom, and then walk out without using soap or water. I worked in a grocery store and saw how many people would pick food up off the shelves and eat it without washing their hands. I saw person after person come into work when they were very sick because they could not afford to take the time off.
On top of all this, I live in San Antonio, where we are housing repatriated people from Wuhan, China and from the Diamond Princess cruise ship. There are already diagnosed cases here.
Feeling Dismissed and Ignored
When I began expressing my concerns, I kept getting dismissed — in patient groups and among some of my friends, as well as in news coverage and public health messages for different groups. I’ve heard people saying things like, “this is a risk only to children and the elderly.” The CDC doesn’t have resources specific to people with underlying chronic conditions in its “Information for Specific Groups” section.
We in the chronic illness community are being ignored or sloughed off like secondhand citizens.
No one is talking about how the health of the weakest of us affects the health of us all. No one is talking about how we need to protect those of us most vulnerable when this virus spreads across the country, as the CDC has clearly stated that it will.
A Lack of Information Increases My Anxiety
We don’t have enough information to understand true infection or death rates, nor do we know how this virus is affecting the chronic illness community. Even reputable sources are only guessing because even though the coronavirus is in the same family as other respiratory viruses, we are dealing with the unknown right now. But being told that this is “just like the flu” and we should not worry about it is not a comfort to me. The flu and pneumonia come with a higher mortality rate for people with chronic illness and who are immune-compromised. I find no comfort in that at all.
I have anxiety. My anxiety can get really intense. And it is made worse when no one discusses my fears or answers my questions directly. CreakyJoints is the only health organization I have seen so far that has addressed the precautions we need to take.
I don’t want this fear to take over my life, but I don’t want to be lied to or have my fears dismissed.
If I can discuss this in a rational and reasonable way with real information, then I will know how best to proceed when making decisions and have some of my anxiety alleviated. I don’t want media hype to inflate my fears or my prospects regarding what will happen, but it is also very hard to figure out who or what to trust. So here is what I am doing to try to maintain my sense of reality and make solid decisions based on what we know right now.
- Follow updates on the CDC website.
- Check out the Health and Human Services info in my local area regarding what is happening in my community.
- If new information pops up, I try to verify it with more than one source instead of just believing what I read in that moment.
- I don’t allow myself to constantly read the latest articles. At some point in the day I shut it all off or it becomes fodder for my anxiety.
- I stick to reputable organizations that have a precedence of reporting the facts without emotional bias or fearmongering.
- I am taking extra precautions like wiping off my desk and telephone at work. I keep sanitizing wipes in my bag and hand sanitizer at my desk.
- Because we are housing infected patients in my city and based on the CDC recommendations, I have asked about a pandemic plan at my work. It turns out they were already figuring it out and I found out that plan yesterday.
- In the next week I will be stocking up on groceries and supplies in case we have to stay inside for a couple of weeks.
- I have a small group of people I can discuss my fears openly with and who help to keep me grounded.
- Distract, distract, distract. I am doing all these other things to be aware but I also do not want to let the fear take over my life, so I am making myself do fun things that I enjoy: bingeing my favorite TV shows, creating art, playing games, and petting my amazing dog who always knows when I am upset.
I don’t know what the future will bring, but I do know that I can try to be as prepared as possible and have to take things one day at a time — or I will get lost in all of this.
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