When you are told you have a rare disease, the first thing you think is “I am dying.” It is a punch in the gut. My blood showed signs of concern and I was referred to an oncologist/hematologist. My brain immediately convinced me that I was only seeing the hematologist in the practice because there is no reason to see an oncologist.
My first appointment was incredibly stressful. I was sitting in an office with signs and infographics all centered around cancer. It was not resonating with me. When the doctor came in, he was profoundly serious and although professional, a bit short and matter of fact. He began to explain that test results showed I had cold agglutinin disease (CAD). He explained it was a rare blood disease and quite possibly secondary.
The medical team was looking for underlying causes and I would be sent for testing. I asked a question, and he looked at me deadpan and said “You know, I am a cancer doctor.” People talk about tunnel vision, which happened to me. It was as if I was no longer physically there. I was watching myself experience this news.
That first month I was under an insane amount of stress. Eventually, it was determined that I am primary and subsequently my hemoglobin (HGB) stabilized, and I have gone without treatment. I did request a different doctor and I am happy I did. The doctor I have now, also very professional, fields all my questions and is always upbeat and positive.
Read about HCP resources for CAD
Of course, with CAD, there is physical stress on your body. But no one talks about the outside stress associated with this disease. There are so many stress factors that come with a rare disease that are not exactly physically related but can cause a physical reaction. For instance, I am always concerned about the future, it could be tomorrow, next season, or years down the road.
I am concerned about whether I can do my job come Monday. Will I have enough energy? Luckily, it is spring here in New York and the warm weather is my friend. For now, I am good if I take precautions. However, I am always thinking about the seasonal changes and most of all, winter.
Outside of weather concerns, my brain is always working to figure out what adjustments will I need to make as I go forward. This was difficult during the pandemic, which added a new layer of fear. I was worried that I would contract COVID, and that worry kept me home, isolated. The news was all about having comorbidities and how life-threatening COVID could be with a compromised immune system. Much like CAD, there was little understanding of what could happen to you and or how treatment could be used as it was all happening in real-time.
For now, my stress over COVID has waned and I still wear a mask because, if nothing else, it has helped me avoid seasonal allergies. Now that things are slipping back into normalcy, I find myself out more, but not nearly like I used to.
There are a few things I have learned to help combat stress. The biggest for me is getting enough sleep. I need more sleep now than I have ever needed and when I get it, I feel amazing. Another is to exercise regularly. I found that sitting around, afraid to use up my energy, has really hurt my stamina. The last one is breathing exercises, that has become one of the most important changes I have made. It is a fantastic way to relax, and reset. It also helps stop the swishing pressure we get in the head.
As I move forward, I am always concerned about my future. There are many primary patients like me that have had CAD for 20 years and longer without treatment and that have lived successfully with only a few hiccups here and there. They made lifestyle adjustments and decided to not allow this disease to control them.
I aspire to this idea but it is hard, and I am not there yet. I am still in the beginning stages of figuring out how my body responds to the variables in my life. I am always adjusting and working around things to try and live a normal life.
I feel it is important to mention that doctors need to be as upfront as they can. In my opinion, it is vital that specialists take the time to create handouts that discuss the other things patients may experience. I would even say to create a FAQ page for patients to take home that very first visit because we don’t know what to ask; we are just in shock.