It’s been made known to me recently that a lot of the people in my life have the wrong idea about what’s going on with my illness. I suppose this is due to lack of knowledge and understanding, as well as not wanting to open the can of worms that is the discussion of my disease. I get it. It’s human nature to be curious, and yet at the same time awkward.
Some friends and family come right out and ask the questions they want to know the answer to. They are direct, clear, and concise. They want to be in the know throughout the whole process, maybe this helps them be more supportive.
Others wait for me to update them with bits and pieces on my healthcare. They follow the news as it comes in, rarely asking questions, content with the bare minimum.
Then there are those that do a bit of their own research. They read articles about Rheumatoid Disease, drug options, new fad diets, and testimonials from people who’ve had less aggressive strains than I. They endlessly give their opinions on the medications I should be taking, the weight control and dieting that I should be on, and how I should live through my illness. Not from the stand point of a medical professional, but from a person who subscribes to Rheumatoid Arthritis Today, and keep their screens open to WebMd.
I’m happy that the people in my life like to be informed of my disease, and like to stay in the know to an extent. But at the same time, no matter how many articles are read, or how often they come to visit (which lets be honest, is only on my good days), it’s not the same as experiencing it. No one will ever know what goes through my head, or my body. It’s easy to say “I understand what you’re going through” when talking about a wicked case of the flu, or a nasty migraine. But they can’t possibly know what it feels like when I wake up feeling like a bus hit me in the night. Or that getting up from the toilet feels like my knees have dull butter knives being slowly pushed through them. That when I try to get dressed my shoulders feel dislocated. And that showering when your hands ache is one of the hardest things I’ve ever experienced. Biting my shampoo bottle to get a smidgen out on to my wrist because my hands are in the immovable claw position, or using my mouth to hold my loofah has been one of the most trying times of my life. 34 years old and I am an invalid on most days. Tell me, what article can tell friends and family how that feels? I need to buy it up in bulk and send it to everyone I know.
Sometimes being ill is the loneliest feeling in the world. Even with the unending support of my mom, the only person besides my doctors who has the closest to accurate idea of what my life is like, it can be hard to move through the tides of my disease.
I have 14 doctors whom I work with. 14 medical professionals who have years upon years of experience working with the ill, and still no one can help me. In the beginning, I used to think it sounded kinda cool that my Rheumatologist needed to consult with other doctors regarding my case. I was an anomaly. No one had seen a case like mine before. It was more aggressive, more damaging, and more out of control than anything any of them had seen. But I quickly realized that that kind of “special” isn’t the kind anyone aspires to be. It’s not special or fun that no one can help me. And people wonder why I don’t want to talk about it. Why I don’t care to share. I mean, what do you say to someone who wants to know what dying feels like?
Because at the end of the day, that’s what’s happening. Some of my doctors have had the nerve to say it out loud. Others just ignore it and keep their mouths shut. No doctor wants to tell their patient that they can’t help anymore. Sure, they can keep prescribing medications as they are manufactured, and talk about healthy lifestyles, and a positive can-do attitude. But it must be hard for them. To have to look in the face of someone who they don’t know how to help. It’s the failure a doctor never wants to know.
As for me…
What do I say to you? What do I say to my doctors? What do I say to the family and friends that have the guts to ask me how I truly feel?
I guess it’s that I feel everything and nothing.
Not the answer everyone wants but the only one I can give.
I feel like I’m a broken record when I talk about how much pain I’m in. It sometimes feels like no one really believes me when I say it hurts everywhere. I’m tired of being asked what my pain scale is from 1-10 when it’s always more like 50/10.
I cry almost every day in the comfort of my bed away from prying eyes, so that I can stand in front of everyone else and smile. I’m not smiling for me, I’m smiling for them. So they don’t have to be touched by my pain, my life, my suffering.
You want to know what it feels like to be dying?
It feels like living. I haven’t died yet. My life still continues. My body still lives, the blood moves through it, and I still walk. Dying feels like living each day in the knowledge that I’m still breathing. That I am still getting up out of bed every day. Dying tastes like the chocolate brownie I ate an hour ago. Dying feels like the hot shower I had this morning. Dying feels soft like the fur of my cat as I stroke her belly.
These are probably not the answers that people wanted. But I’m not ready to live up to their expectations of what my illness should feel like. I know what it feels like and that’s all that matters. Well, that and the fact that while I may be dying, I am certainly not done.