I am a pretty brassy person. (I’m sure this surprises people who don’t know me in real life, as I am so shy on the internet.) I am not easily embarrassed and never have been. I have always been klutzy and loud, and I figured out early on that it was easier to just not be embarrassed by that. Self acceptance. I has it.
However, there is one thing that I get very embarrassed about, and I’m sure I’m not alone. That, my friends, is making a scene, particularly if that scene is health related.
Let me give you an example. A few weeks ago, I was sitting at my mother’s house after eating Eggs Benedict talking about an upcoming family event. I wasn’t feeling great but I had received some bad news that morning so I figured it was from stress. Suddenly my stomach started hurting badly. It hurt as badly as a bowel obstruction, but I knew it came on too quickly to be one. At that point, I realized I was starting to anaphylax.
But instead of giving myself epinephrine, I decided to see if it would just go away. (I’m actually laughing out loud as I type this because of the sheer stupidity.) Shockingly, it did not just go away. After several minutes of wailing like a wounded animal from the abdominal pain, I got that killer “Irish girl spent all day on the beach with no sunblock” full body flush. You know the one. The one that says I’m anaphylaxing.
At this point, I should have given myself epinephrine. (Please note: I am not afraid of epinephrine. It resolves my symptoms quickly and I know that nothing bad will come from using it.) But I didn’t want to use my Epipen because I didn’t want to cause a scene. This is so stupid. I know this is stupid. I know everyone reading this is shaking their head because it’s stupid. But it’s true.
So my mother and sister noticed me changing colors like a decoder ring and asked if they should call 911 and give me epi. I said no. Instead, I pounded liquid Benadryl. I actually can’t drink things quickly in regular life (I was an embarrassment in college – there was no chugging of any type of alcoholic drink as I was just physically incapable), but when I’m taking Benadryl to try and avoid using epi, I am a champion.
As I was open-throating Benadryl straight from the bottle, my blood pressure dropped precipitously and my field of vision got fuzzy like a dream sequence from 90’s television. Then my heart did that really entertaining thing where it skips beats. At that point, my sister called 911.
Now, let’s recap. I understand my disease – check. I know that I should use epi sooner rather than later when having anaphylaxis – check. I am a medical scientist and understand on a molecular level that epi will not hurt me – check. I know that sometimes I have to go to the hospital because I have a life threatening disease – check.
So why didn’t I just epi and call 911? Because I didn’t want to make a scene.
Literally, as soon as my sister called 911, I was embarrassed. It’s stupid. I know it’s stupid, but it’s true. I know they didn’t care that I interrupted their day because I obviously needed medical attention, but it didn’t matter. It’s not logical. I don’t like needing emergency care, especially if I am with other people.
The ambulance showed up and then like half the neighborhood suddenly needed to walk their dogs by my mother’s house at exactly the same time. You know how sirens make dogs have to pee, right? Right. So now there are people outside with binoculars and I’m in (unattractive, ill fitting) pajamas at 11:30 while I explain my disease to the first responders who have never heard of it. It shouldn’t be embarrassing, and I wouldn’t be embarrassed to be present if it happened to any of you, but it embarrasses me.
Side note: I think I would actually be more likely to seek emergency care if I could be sure no one would find out. This has nothing to do with the behaviors of the people in my life. They are all wonderfully supportive. I know. I’m weird.
I find needing emergency treatment of pretty much any kind embarrassing. Emergency room, epipen, whatever. Needing this type of medical attention inherently puts me out of control. There’s always the chance that I’m going to end up admitted to the hospital and lose days of my life. I know it’s sometimes necessary, but that doesn’t change how I feel. I’m usually not interacting with providers who know me, so I can’t predict what will happen. I don’t like that. And I don’t like it when people see that, either.
I don’t like making people worry about me. Until fairly recently, I kind of coasted with regards to public perception of my illness. By this I mean that people knew I was sick, but didn’t know the severity, and I knew they thought it was less serious and I let them. It was easier for me, and I don’t regret making that choice. But it did mean that when I told people, a lot of them were shocked. Like, really shocked.
I knew that once I told people, they would be upset because they care about me and they worry about me and want me to be fine. Embarrassing! I don’t want them to worry, and I feel like any time I have to make a scene and call a lot of attention to my failing health, it just sort of reinforces the gravity of the whole situation.
And then there’s this other part, where I worry that I’m making a scene unnecessarily. Like I worry that I’ll call the ambulance and they’ll arrive and be like, “Oh, you’re fine! Why did you call us?” even though I AM ANAPHYLAXING AND THERE IS A CHANCE I COULD DIE FROM LOW BLOOD PRESSURE. Like I said, it’s not logical.
If any of you mast cell people told me you waited forever to give yourself epi, I would be all over you. I would send you pretty infographics about how you should use epi early and quote statistics about how often people accidentally stick themselves with epipens and live to tell about it. Because you should use epi early. It will help you. I know the party line AND I AGREE WITH IT but this fear of embarrassment thing is really strong. And I am sure I’m not the only one who feels like this.
This may surprise you, but I’m actually much less afraid of medical professionals telling me I wasted their time than I am of people in my life telling me that. I can handle medical professionals. This is not my first rodeo. But feeling like I disappointed the people around me sort of mentally reinforces that my disease is “wrong” and therefore I am “wrong.” (Again – this feeling was not provoked by the actions of the people around me.)
So I’m trying really hard to get over this because if I’m being honest, I can’t really afford to be cavalier with this anymore. I am anaphylaxing a lot more than I used to and my body is tolerating it a lot more poorly than it has in the past.
So, there you go. I wrote an essay and called a lot of attention to my fear of having a lot of attention called to me when I need attention.