Since I was diagnosed with cold agglutinin disease (CAD), I have had a tendency to sit in a protective state. I’ve often wondered how I would have handled this news had I found out about it outside of the pandemic.
I feel that my COVID-19 diagnosis made CAD much harder on me—at least mentally. I have spent the better part of 2 years making sure I am meticulous, I was still wearing a mask, using hand sanitizer constantly, and staying aware of other safety measures to avoid sickness.
What I have realized is that this is all overkill. It is more of a mental need to protect myself than a physical one. Yes, when you have CAD, there are measures you need to take to try to avoid the extra hemolysis that you could add to your disease. Avoiding the cold is the most important thing you can do to protect yourself. As we know, that includes cold drinks, food, showers, and swimming, among other things.
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If you are primary like I am, then these would be at the top of your list. Second to that is avoiding getting sick. Our immune systems are already taxed, and adding something to them only stretches our body’s ability to fight off illness. When you list it in this way, you can see it and it makes sense, and from there you can make plans and go on with your life by adhering to the necessary boundaries that you now have.
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I can see all of this now, but during the pandemic, my judgment was clouded. I couldn’t see what was needed in its most simple form. The information we were getting was all over the place, making it quite confusing, and social media and news outlets compounded that confusion.
I decided to pull in and tighten my circle, which was easy when we were all in lockdown. As the world began to reopen and people were moving around attempting to go back to normal, I was not. I was mentally stuck in that self-protective mode. I got used to the convenience of having anything I needed delivered to me and the safety of wearing a mask.
You could see the frustration building in the people I love. They never made me feel uncomfortable and as a matter of fact, I didn’t notice it until they started to make plans without me. They had gotten used to me saying no.
I think it all came together after I had a conversation with my hematologist. I had talked to him about my concerns about not getting sick. His response was so simple but profound. He said, “I have cancer patients that work in schools, hospitals, and every field you can think of. They are fine and they go about their lives without issue.”
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At the time that he said it, for some reason, it didn’t penetrate. Recently, I thought about it as I was pondering moving back into a normal lifestyle. This time, it just struck me, and it made complete sense. Then I read what another person with CAD was doing on vacation. They described how they were not going to let this disease stop them. They went scuba diving, ate at restaurants, and enjoyed live music and dancing. I felt jealous because I missed those things. She was 100% right.
I had to really sit and think about my actions. Prior to this, I was just going through the motions, which are easy during the cold months because “it’s cold” is an acceptable excuse to those in my life.
Luckily, this epiphany has happened as we slip into spring, making the adjustment easier on me. I am happy to say that I have been out and about more than I have in 2+ years. I have been pushing the envelope a little as well. I had a drink with just a couple of ice cubes and I was completely fine. I have been going out without a mask. This has been the hardest thing for me to give up, but I have been doing it. Every once in a while, I get a sick feeling in my stomach and I ignore the fear and just keep moving forward.
I am so thankful that I spoke with my doctor about this and even though it didn’t resonate at the time, his words were still in my mind. Also, the fact that I have other CADs to discuss what they are doing, and they are fine really makes this transition back to normal so much easier.
