Secrets are lonely
Ther’s something lonely about holding a secret.
I guess it’s not really a secret but it feels like one. My diagnosis. It feels too fake to call it an illness because from the outside I’m physically okay — can I be labeled as “ill” if I can’t physically see anything?
I haven’t told many people or friends about my illness. I’m going to try that word on for size. Ill-ness. Because, much like I don’t want to use the word illness due to the legitimacy it lends to the diagnosis (though the disease really is an illness), “illness” sounds much more real than “diagnosis”. And I think if I were to examine my feelings closer and put them under a microscope, a large part of why I haven’t told my friends about my illness is because either 1) their reactions will make it seem much more real when I’ve been desperately trying to ignore it or push it away (still in denial!) or 2) they will act dismissive and wave it off, either because they are too uncomfortable with the situation to confront my pain and grief or because they’ll try to put a positive spin with “well at least you’re alive and not going to die anytime soon”, and while the latter is true and me not exercising will help with not dying anytime soon (how counterintuitive from what they told you in health class), it also doesn’t take away from the fact that this is a big life change and a big fucking deal.
And so, it’s a bit lonely holding it in. There are days like this morning where I wake up and feel incredibly terrified and scared and lonely in being alone in my fear. Wondering if it’s my heart having arrhythmias or just fear making adrenaline race throughmy body (which by the way is also not good for me with this disease). Wishing that there were someone there right next to me to comfort me and join me in my sadness, to hold everything else for me while I explore and navigate the hard feelings.
I also haven’t told many people because I’m worry it’ll legitimize what’s going on and I’ll have to face my new reality smack on in the face. There’s also the fear/worry/annoyance of having to explain myself and the situation over and over again. I wish I could give people a business card that said “May Chang. ARVC disease holder. Scan QR code for more info” so I don’t have to go over the facts, but then again while there is an exhaustion that comes from explaining the situation over and over again (kind of like getting emotionally depleted trying to find a therapist and having to repeat your life’s story and why you’re fucked up over and over again). But if I’m to be honest with myself, I think a big part of it, of not wanting to tell people, is then telling people means that I have to confront myself, confront this illness face to face.
Even the words I’m using “the illness” instead of “my illness”, “the diagnosis” instead of “illness” — I can see that these are all ways to distance myself from the disease, a way to distinguish that this is not me, this is separate from me, this has nothing to do with me. And maybe underneath all of that sadness, at the root of the sadness is the seed of knowledge that acknowledges: No, May, this really is a part of you and will be a part of you for the rest of your life. You have the disease. And it is scary. And it’s okay to be scared”.
There’s also a part of me that wants to tell friends now, at least before July 12 when the heart rate monitor comes off. Because it feels like with the heart rate monitor, you can actually see that there’s something different about my body; the monitor legitimizes that this is real, that this is a real thing that is happening to me and is a way to prove to others — and myself — of the disease’s legitimacy. Whereas when the heart monitor is no longer there, then there’s nothing signaling that there’s something wrong with me — I will still look like a normal healthy human on the surface.
And to be fair, I am technically healthy right now, it’s just that my heart is starting to show signs of the disease. I guess I should look it up and do more research. Part of me doesn’t want to do the work because I know my parents and brother have done some research on their own, but if I’m going to live the life I want, then I need to do my own research and be an advocate for myself and my wishes, because I’m the only person who can do that.