The last couple of years have been very stressful for all of us. However, for me, the stresses of the pandemic era are magnified by my diagnosis of autoimmune hemolytic anemia, specifically cold agglutinin disease (CAD).
Living with CAD has been an extremely frustrating experience. One of the biggest frustrations has been learning as I go. As with many other rare diseases, the information needed to manage the disease is scarce and difficult to unearth. In the CAD world, some people have primary while others are secondary. A common theme I am finding amongst both groups is self-isolation. It makes sense since you can control temperatures and lower the risk of getting sick if you stay home.
I know that I have made some bold decisions compounded by the fact that I was diagnosed with CAD during COVID. I have seen many other CAD patients that have gone ahead and decided to continue to live a normal life, while also being cautious. What I realize now is that I have not done that.
Up until recently, I found it difficult to live my life the way I have in the past. I would not go out to eat simply because I would not go out without a mask while others around me had shed theirs. I would go to the movies, but wearing a mask makes it hard to eat my popcorn.
Read about experimental therapies for CAD
As a matter of fact, I haven’t been doing anything I would consider normal since the pandemic began. We have all gotten used to a modified lifestyle to accommodate avoiding the spread of the virus. The problem is everyone has returned to their normal activities except for me.
It does not make any sense in hindsight since everyone in my household moved past this. Some have gone on trips overseas, others on business trips, out with friends, out to eat, shopping, etc., and all of this without masks.
The other day I was out with my youngest child, who is learning how to drive. We stopped at a deli, and I went to grab my mask, only to be told it wasn’t necessary any longer. I do not know why but it never occurred to me that I was the only one doing this.
I am now aware of the multitude of excuses I have used. Most recently I would say I cannot do such and such because I have not had my booster. However, at my last hematologist appointment almost 8 weeks ago he tested my COVID antibodies and they were high. Even with that knowledge, I have used this excuse. Prior to that, it has always been “I cannot get sick or cold” which worked well in the cold months. My point is I did not realize that I have been that scared by this pandemic and the subsequent disease diagnosis. It is a strange mental paralysis.
I am not depressed. I feel great. The warm weather has really changed this disease for me. It has been a wonderful couple of months with a blip here and there. I did not realize that my behavior has been altered in a way I did not recognize until my child pointed it out. That made me wonder how different things would have been had I not been diagnosed during COVID. I would never even think to wear a mask. I would have just avoided getting cold and used extra care keeping my hands clean all the time and not touching my nose to avoid getting sick.
I knew that COVID made me a little paranoid, but I never realized the extent. It is time to live life; yes, be cautious but just get out there and enjoy all the things I love to do. CAD is not a death sentence. It is a warning to be safe, protect yourself, understand your symptoms, and know what to avoid. And as important, go and do what you love!