One of the harder parts about having a rare disease such as mine, cold agglutinin disease (CAD), is dealing with the people in your life, whether that is your family, friends, or co-workers, among others. It’s difficult to explain because it is complex, but it still seems like it should be simple for people to understand.
My family is wonderful and incredibly supportive, but there are times that they just seem to forget. That’s probably because I look completely fine and often feel that way as well. Sometimes, though, symptoms will come on so suddenly that they do not understand.
I cannot tell you how many times it has been suggested that I go swimming in the summer. Unfortunately, the lakes around here are never warm enough for me and I’m not interested in wearing a scuba suit. The temperature control in the car is also a huge issue. I, of course, have the heat blasting as of late. It has been too cold for me and then someone inevitably turns it off because they are all sweating.
The same problem occurs with the air conditioning, but I am the one who lowers the air. The house is another story, but luckily, I control the temperature. They can all easily take off layers of clothing; I cannot, try as I might, get warm enough.
Read more about experimental therapies for CAD
There are times when I have CAD exasperations and it hits me fast and like a ton of bricks. When this happens, I need to scrap all my plans and just wait it out by laying down for a while. It makes me feel bad and it’s quite frustrating that I have had to back out of plans so many times. Then there are the suggestions that we get ice cream or go grab a cold beer. Or, I get weird looks when I grab things from the freezer with gloves.
Very few people outside of my family and close friends even know I have CAD. It’s personal and I don’t feel comfortable getting into it. Explaining it to people is just so difficult. It often brings on more questions than I have answers for.
When you tell someone you a have a form of autoimmune hemolytic anemia, all they hear is that you have anemia. The subset, the rarity of it all, goes out the window. In their minds, it’s simple: eat a steak. Before I was diagnosed, even I only knew of iron deficiency anemia. I had never heard of any others, let alone an autoimmune version.
My parents, being as supportive as they are, immediately tried their best to learn as much as they could when I was diagnosed. Even after reading and trying to understand what I was experiencing, they still suggested I eat meat. You see, if you were to google “anemia,” there is a ton of information on iron deficiency anemia but not enough on CAD. And a great deal of the information you can find on CAD gives a short blurb and then goes into difficult-to-understand information that makes it hard for most laypeople to fully comprehend. Yes, there are sites that explain CAD in detail, but you need to know they exist.
But the truth of the matter is that I am thankful because it could be so much worse.
I feel fortunate, even with some small complaints, that I am surrounded by people who love me and are doing their best to support me while I deal with this. Honestly, they are going through it too. They are used to a healthy mom who could do a million tasks and still end the day with a smile; a daughter who could call with a funny joke; a friend who could go out and have dinner, drinks, and fun shopping.
CAD has robbed me of some of these things, but not all. I keep doing my part as best as I can so I don’t only look healthy but am truly healthy. Will it work in the long run? I don’t know. But I believe in staying positive, not only for myself but also for the people around me who love and support me.