I'd like to think that over the course of this summer I have started to become more accustomed to living with CVID. Too bad that's not actually true. Yes, I now know the drill as far as at home treatments go, and I'm getting better each day about using hand sanitizer obsessively. I think I have it all down until I actually have to get a treatment. Then I realize I am in no way adjusted. I am not accustomed to putting aside an entire day every month for a medical procedure. I am not accustomed to spending the day before abnormally exhausted and fatigued. I am not accustomed to needles, and blood, and hours spent sitting on a couch while medicine drips into my veins and a nurse checks my vital signs. Not only am I not accustomed to it, but I am annoyed by it. Deeply, hugely annoyed.
Which brings me to the main point of this post: Bruises. As anyone who has given blood, or has had an IV before knows, a rather nasty bruise tends to develop on the site where the needle is put in. In my case, this is always the inside of my left elbow, which is where the IV goes for my treatment. Such a nasty bruise is generally noticed by other people. Which then leads to the naturally inquiry and assumption "That's a nasty bruise. Did you give blood today?". A very innocent question, yet one that leaves me in a bit of a quandary. Do I tell them the truth? The truth is rather personal, and unfortunately human nature inclines us to look somewhat negatively on someone who has a permanent health problem. Pity, no matter how kindly meant, can be poisonous. I do not want your pity. And so my first instinct is not to tell someone that I have a health condition that requires me to get an IV treatment once a month. However, the truth is also educational. I myself had never thought about immunodeficiencies, what they mean or how they are treated before I was diagnosed. As someone who is now part of a small and mostly unknown community, should I not educate and advocate for myself and others like me? Should I not raise public awareness and concern about people living with an immunodeficiency in order to increase funding and interest in researching the causes so that someday there may be a cure? Perhaps I am being somewhat cowardly, hiding my condition, telling only a very select few of its existence and pretending to the rest of the world that I am normal. However, as mentioned above, I am still not accustomed to my new reality. In many ways it is still raw, it is still painful, and I am by nature a private person when it comes to the unpleasant parts of life. I haven't been able to decide yet just how open I want to be.
But that is the trouble with bruises. They are there for the world to see. They invite questions that, though well-meaning and innocent, force me to make decisions that I would rather avoid. My illness is invisible; the bruises left from my treatments are not.
