“Do you feel like you have quality of life?” was something asked by my palliative care nurse yesterday. Honestly, who could call this tube and machine attached to me “quality?”
I have been writing for almost five years about living with a terminal disease that is masked by this perceived normal, if you will, and the absolute frustration of everyday ignorance when it comes to people respecting and believing your reality. We are made out to be drama queens, negative, “too much”, and just about any other word humans would like to use as a buffer for their level of comfort. It’s an isolating feeling to know you are surrounded by people who will slap a prayer on a Facebook status, but will indirectly do what they can to keep your “suckage” far away from their steady life. It’s a dull feeling to know that you live among people who are contributing to the lack of early diagnosis problem by once again thinking you are just being dramatic, or negative. Patients literally die because they are told consistently that nothing is wrong.
Late January, death was on my mind quite frequently. My “end of life” wishes, and how they might find me in my home. I was having tachycardic episodes just even trying to pet Rocco, and found myself laying in the floor more often than not trying to calm my breathing, and move past that suffocating feeling. I knew what was coming; my invisible illness was working its way out.
After an almost two-week hospital stay, countless mental breakdowns, bruised arms, bruised hands, new nurse friends, and “mixing classes”- I walked away with a tube in my chest attached to a little machine. I never realized how many v-necks I own, or tops that lace up until I noticed a little white patch peeking out in the mirror. I have attempted to walk across my living room countless times before feeling a little tug reminding me that I am permanently bonded to this anchor. I forgot to enjoy just seeing my necklace resting against my bare chest, or how amazing my weird habit of rubbing my collar bones felt in which now my right one has a tube stretched over it.
Quite shockingly, the amount of “I didn’t know you were THIS sick” messages I received is more sickening than my heart failure in itself. I guess people really do want this justifiable evidence that you are in fact suffering which I guess seems understandable, but; while they see tubing they still don’t see the bills pile up for the expensive maintenance that is required to keep you alive. While they see your pump now they still don’t see you spending enormous amounts of time mixing your medication just right so you don’t accidentally kill yourself. While they see grumpy Facebook updates they don’t feel the mind numbing reality of laying in bed, throwing up, running to the bathroom every five seconds, and doing what you can to manage your pain level. While they see your spotty red rash along with your chest they don’t see your mini hospital that is quickly swallowing your cute home.
Congrats. You have your physical evidence. I am sick. My body is now reflecting its insides – and you know what? Despite whether Pulmonary Hypertension was visible to you or not, it has been this way for seven years – since day one of my diagnosis. It has always been this level of life altering since the moment they told me I did not have a good chance at a quality of life for long. It has been this horrible since the first echocardiogram when I was eighteen, or finding out I could never carry my own child. Open your eyes, listen to people, and gain some perspective on what sick means. The thought, and fact that you are stuck inside of a body that cannot carry you across the finish line, and that will cost you millions of dollars is realistic. You are allowed to feel this way; do not minimize your pain for others comfort.
While I realize I am NOT my disease, I find myself enveloped within it quite frequently. Instead of fighting it, I am making friends with it whether you can conveniently see that or not.
-haley.
