The one word you never want to hear coming from your loved one’s mouth….”Cancer.” As soon as that word is used say goodbye to everything you once knew. Even the entire demeanor of the conversation is about to change. It doesn’t matter who it is you are talking to either, as soon as they know that you have cancer, they know that you are sick. It doesn’t matter if they can physically see the cancer cells attacking your body, and it doesn’t matter if they can feel your constant pain. The entire world knows what cancer is, regardless of which one you are so fortunate to have.
The first thing I envision when I hear the word “cancer” is an elderly woman, pale, and hooked up to an oxygen machine. She’s laying in a hospital bed and has her head wrapped in a headscarf because all of her hair has fallen out due to radiation. This image isn’t one portrayed from television, but it’s actually the exact image I have of my Nanny who was diagnosed with lung cancer some years back. So, if anyone is like me when they hear someone has cancer the first image that probably comes to their mind will be their loved one who suffered from cancer, or it could be the actress who played it so dramatically while binge-watching “Grey’s Anatomy.” Either way when you hear the word “Cancer” you are able to associate something with it. Which is not the case for me when telling someone I have Myasthenia Gravis.
In all honesty I sort of envy those cancer patients. You see with your disease you don’t need to explain to someone what it is. You don’t need to stress over going to the emergency room because you are probably more trustworthy of your caregivers to take proper care of you. Those are little details you take advantage of, but there is a few more solid reasons. Like, when you sit down with your doctor to go over your diagnosis this is where I envy you most. You are able to set out a realistic plan, this medication, this chemo therapy, or if it’s really bad you hear an expiration date. You have a timeline set either way. Whether it’s going to be “X” amount of times of chemo or “X” amount of months left to live your life however you want. You can see an end to your suffering at some point. Not me. Every single day of my life consist of a mind game. Melissa vs. Myasthenia Gravis. I can’t tell when my legs are going to be so tired I can’t even walk to my car. I can’t tell when the double vision is going to kick in, or my breathing is just going to go. Every single day is an obstacle for me, and not knowing when it will end it just torture.
As if that weren’t enough another difficult parts of having this disease is the lack of knowledge people have about it. I’m not talking about my friends or family not knowing either. Oh, and we can’t forget the outright nosey strangers that see your port accessed and feel they have a right to ask too. I’m talking about the nurses and doctors. The people you are supposed to trust your life with, but I can’t. [I can’t tell you the number of times I have been told by either a nurse or a doctor that “they only skimmed through it in nursing/medical school.” Following that statement usually comes with the next question “can you remind me what it is?”] There is nothing scarier than walking into an Emergency Room alone, and just praying AND trusting in God to give you a nurse/doctor that knows just enough about Myasthenia not to kill you, or make your symptoms worse than they already are.
I promised myself when I first got sick that I would never be like any of the patients that I used to care for before I myself became sick. (Ironic right, I used to take care of the sick, now I’m the one that needs to be taken care of) This has become one of the most challenging promises I have ever made to myself, let alone keep. Constantly explaining myself to others that should have some type of knowledge towards my disease gets old. Making sure they give me the correct doses of medications, is draining. Keeping up with everyone around me is part of my job to keep me alive and well, but I feel like the amount of attention and energy I give is so much more than I should.
Why is it the one word that no one wants to say, everyone knows so much about. Quite frankly, I find it bullshit. “CANCER,” it’s ugly but, so is “Myasthenia Gravis.” I’m not here to compare which disease is worse. I just want to make it known that there are diseases out there that are just as ugly and devastating. They are debilitating to not only your health but your mindset. It’s draining constantly being on your toes and being your own advocate.