I know that I’ve said on many an occasion that I don’t subscribe to the Pain Olympics ideal. I will argue before anyone that this disease is not my own, and that not only do I share it with many, but there are so many other diseases out there that are worse than mine. Or if not not worse, than certainly more rapid in onset and/or life expiration. We unfortunately live in a world where diseases are as abundant as spiders, and often far more scary to deal with.
Its not a competition. No one wants to be sick. No one is going to admit they prefer the never ending pain, rather than living a healthy long life. And I know I’m starting to sound like a broken record, and I’ve probably made this point before… But if one more person tells me that someone they know has a relatively low impact disease and that I couldn’t possibly understand what its like to be sick, I WILL SCREAM.
About a week ago, I was talking with a friend and she was upset because her boyfriend is dealing with vertigo as a result of an ongoing ear infection. He had to take time off work at his construction job because of the dizziness and headaches that the infection had caused. I asked her if he’d been in to see a specialist yet, as I knew ear infections can be quite disruptive if not dealt with quickly. My friend went on in length about how stressed out her boyfriend was, and what a toll this whole thing was taking on him. I sympathized, stating I’d had an ear infection before and that they can be quite horrible to deal with, and that I was sorry he was in pain. To which she replied (to my utter shock), “Well, his is way worse, and you couldn’t understand his pain.”
Look, I’m not trying to be an asshole here, or claim that I have the worstest disease of them all. I’m trying to sympathize and just say I understand. Its not a competition on who had the worst ear infection ever! I’m sure his IS quite bad if he was experiencing vertigo so badly that he needed to take a week off work. I understand that must really suck. Losing rent money sucks.
“You couldn’t understand his pain?” Seriously?
I do more things while being in pain than you could possibly imagine. I put my body through things you probably wouldn’t think of doing, because normally you’d just stay in bed and ride out the sickness. My issue is that I can’t ‘ride out the sickness’ because it NEVER ENDS. I will be sick for the rest of my life. I will be in pain for the rest of my life. And because of my diseases, my life will almost certainly be shorter than yours.
I have woken up on a Monday morning and known without a doubt that I wouldn’t be able to leave my apartment for at least three days. I’ve woken up on an infusion day in so much unbearable pain, and known that no matter what, I would have to get up and get to the hospital for my treatment. I could be screaming on the inside at every step down the driveway, but I’d force myself, because I have to. I won’t go as far as to be petty and say I’d love to trade a one week ear infection for my life, but don’t think for a moment that I can’t understand pain.
Pain isn’t just a physical feeling anymore. Sure, I feel the pain everyday. But its so commonplace now, that it just is. I don’t know what a pain free day feels like. I haven’t had one in almost 5 years. Everyday isn’t a “pain day”. To me, its just a day. Because the pain never leaves. The fatigue never leaves. The struggle of accepting what my life is now never leaves. The fact that my life will most likely be cut short never leaves. Pain isn’t a physical feeling. It just is.
Being sick isn’t a competition. But don’t you dare belittle what I go through, or I dare you to go through it yourself.
I know time and time again I have advocated for the fact that being sick is not a competition or a race. We are not in the Pain Olympics, and no one gets a medal for being sicker than someone else. But I have to stomp my foot today and cry out for all my sisters with Rheumatoid Disease and declare “Our colds are not like your colds!”
Its cold season for sure. I can’t get on a bus or be in a doctors waiting room without hearing a sniffle or a muffled cough. A lot of people are sick, and its no ones fault except for maybe the weather and this damn rain that keeps everything damp and chilled. So, we all walk around with crumpled tissues in our pockets, and and extra sweater in our bags, and we look like crap. All of us. No one looks awesome when they have a cold. And everyone, men and women alike, has a little pity party for themselves about how shitty they feel.
Here’s the thing though, having a cold is shitty enough when you’re a regular healthy human. You get a cough, or the sniffles, and a sore throat, and your head becomes a bit fuzzy. Sometimes you gotta stay home from work for a couple days because you feel so lethargic and icky. Eventually after a week or so, your symptoms start to fade, you pull through, and its only a matter of time before you’re having a beer with friends around the corner again.
Let me paint another picture for you though… The picture of what its like to get sick when your entire life is already about being sick. When the cold symptoms start you’re praying that you don’t have the sniffles because of a cold, but maybe because you just breathed in dust from the curtains that you’ll never have the energy to clean. The sore throat starts and you force feed yourself a gallon of OJ because you know you can’t get a cold. But you know, you always know. Because no one knows their body more than someone who lives with a chronic illness.
Colds for us can last as long as three months if we aren’t strong enough to fight it. They can turn into Pneumonia, Bronchitis, Strep, and worse. A week can pass in bed where the only thing we can do is shuffle to the bathroom to pee, and then back into bed so we don’t get chills. Headaches turn to migraines. Those of us with chronic pain can sometimes be blessed by our diseases taking a back seat to let the cold do its worse. But other times we are stricken with flares, whilst also dealing with sore throats, raw noses from blowing too hard, and brain fog. A common two week cold for an average Joe turns into a two month long nightmare. And one of the worst parts is that we often aren’t allowed to get our regular treatments for our chronic diseases if we are fighting a cold or infection. Chemo and biologics have to be put on hold until the current illness clears our system. But they can’t if our flare ups contribute to them. So we get stuck in what seems like a never ending cycle of illness. For days, weeks, months…
So, next time you feel like responding to your friend that suffers from chronic illness that their cold can’t be as bad as that one you had last week…maybe take a moment to think about the differences between your every day life and theirs. Because from where I’m standing, I’d much rather a week long cold than the four weeks and counting cold I’m currently enduring.
I recently had coffee with an old friend, and we talked a lot about past relationships. So much so, that I’ve been dwelling on the memories of my relationships for days now. Truthfully, I’m sneaking up on two weeks here. Two weeks of late night insomnia, where my mind instead of doing the nice thing and allowing me to sleep, decides to remind me of every single person I’ve ever dated. Truth be told, it’s a long list, and sleep doesn’t seem to be getting any closer.
When I was younger, you could have called me “boy crazy”. I had a lot of crushes. Although, I was also shy, not having my first kiss until I was fourteen years old. An embarrassing affair at a friends birthday party, with all of my comrades watching hungrily to see if I’d mess it up. I did. Turned my head the wrong way, smashed noses.
In time I got over the shyness, and in turn learned how to kiss, I suppose. With my seventeenth year came graduation from high school, my first real job, and college. I don’t quite know how or when it happened, but that year I blossomed. No longer did I feel like an ugly duckling, or shy as a mouse. I grew more confident of myself, and finally started to understand who I was as a person. That’s when I started to really date.
As the World Wide Web grew more and more popular, and I was gifted a computer from my father, I found myself drawn to chat rooms where I could flirt more easily, having a mask of anonymity to hide behind.
By the time I went to university in New Zealand, I’d found my stride in the dating world. My best friend Carmel and I used to constantly joke that this year or next year would be the year we would find boyfriends. And while we always gave it a laugh, and crushed on numerous, I don’t think we were ever fearful of not finding a life companion. It was only a matter of time.
Fast forward fourteen years, and here I am at thirty five, still single. Not that I haven’t dated. I’ve held two long term relationships in that time, as well as dated countless others. Do not misunderstand me, it’s not that I fear commitment. It’s as they say, I just haven’t found “the one”.
For the last two years I could have sworn it had to do with my illness. I mean I did have all my hormones turned off due to long term pain management medications. Over a year of no libido is a long time. But now that I’m off them, and my hormones and libido are back in check, I can’t really use that as an excuse. Perhaps it was my insecurities all along that kept me alone. Confidence shows, so of course insecurities and doubt can show as well. Throw in a good dose of self loathing due to weight gain, and you don’t really paint a pretty picture.
So here I was, in a coffee shop, listening to my old friend talk about how they couldn’t find anyone to date who was worth it. And it catapulted my mind into a wormhole of every relationship, crush, sexual encounter, and glance, I ever had with another. Suddenly I was up at night wondering where I had gone wrong, if I should have given one a chance, or if I had wasted time with another. Your mind sucks that way. Anytime you want to sleep, it’s always there to count on with sneaky little unspoken comments like “they could have been the one” or “should have given that guy a chance” or “too late now”.
I hate my mind at 3am.
But despite my mind attempting to screw my sleep pattern, I did learn something of all this. My disease was never keeping me back. It was me. And all those other relationships and crushes and scenarios, well they didn’t work out because they weren’t meant to. My heart was still on reserve for the one who was worth it.
We can’t judge our relationship statuses on the timing of others. My old friends dating life might not be working because he’s yet to meet his penguin (yes, I am using a Never Been Kissed reference, deal with it). Carmel found her soul mate eight years ago, and married him last year. It doesn’t mean that I will never find love. It just means that it’s not my time. Both of my sisters have married already, one being ten years younger than I. Doesn’t mean I won’t. And it doesn’t mean I will. But I’ve got to stop thinking negatively about dating.
People say you’ll meet someone when you’re ready. I don’t think I was ready before. But that was then, and this is now.
I wish you would see the real me, the me that no one sees.
I wish you could see through the denial of what I have in your mind.
I wish you would see the me that struggles every day.
I wish you would see how hard it is for me to maintain this vision of wellness that you expect me to project.
I wish you could see how hard it is for me to live with this pain day in and day out.
I wish you could see your own fear that you push onto me when you tell me to get over it or just push through, like it’s just a bad day and not the disease that is killing me.
I wish you would believe me when I tell you the truth of what is happening to me, and what my doctors are telling me.
I wish you could see that I need you more than just in name, in title. That I need you to actually be a parent, a supporter, a friend.
I wish you would stop being passive aggressive when I tell you I don’t feel well, and not brush it off like I’m being lazy or dramatic or not willing to give my all.
I wish you would help me financially as much as you help yourself.
I wish just once you would ask me if I need help, if there’s anything you could do for me.
I wish you would see how scared I am.
I wish you would see how frail I am.
I wish you could see that deep down inside I’m just a girl who never asked for this, never wanted this.
I wish you would accept me for who I am, all of me.
I wish you could accept that even though my body has changed I’m still me, and that I didn’t want to look like this. It was out of my control.
I wish you could see past the weight gain, see past the medications, and the sickness, and just love me.
I wish you would love me as much as you love everyone else, and treat me as an equal, not an outcast.
I wish you would stop pretending to the world how great you are, how supportive you are, and show how really cold you are.
I wish you would tell everyone that I asked you for help and that you told me I didn’t earn it.
I wish you would tell everyone the truth, that you have not given me even 10% of the support I really need, even though you are one of the people I need it the most from.
I wish you would love me like everyone thinks you do, how you tell everyone you do. I wish it didn’t feel like a lie.
I wish you knew how hard it was for me to get out of bed today, how painful it was just to grip the sheets and pull back the covers.
I wish you could understand how hard it was to have someone help dress me, how hard it is as a 35 year old woman, to have someone else help me put my underwear on.
I wish you could see how I struggle to do even the simplest things, like pour myself a glass of water, or even lift the glass to my lips.
I wish you could see the real me, the one that is in pain every day and just wants this to end.
I wish you would treat me with the love and respect that I deserve, and give me the support you tell everyone you give, the support you have deluded yourself into thinking you give.
I wish everyone saw the truth of what is happening to me. I wish people truly understood and believed me when I tell them I am dying. I am truly dying. It could be a year, it could be ten. But the truth is I will probably go before almost everyone I know, including my parents.
I wish you would all just understand how hard that is for me to process. How hard I struggle with my mortality. How hard I struggle with everything.
I wish you all knew how little I have in this world. How I am close to bankruptcy, that I have bills piling up, and that I’m about to lose the roof over my head. I wish you could understand how many people I have in my life that could change my circumstances in a minute, keep me from homelessness, truly take care of me, but choose to do nothing. People who lie and tell everyone how supportive they are of me and understand how ill I am but would rather spend money on trips, shopping, eating out, and material things. If only they could look inside themselves and see that if they sacrificed one present to themselves, I could be housed for a year, or for life.
I wish you could understand how little and terrible they make me feel when I ask for even the smallest amount of help. I wish you could understand that they told me I didn’t earn their love or their help, and that they don’t need to take care of me.
I wish you could understand that this is my reality. It has been since before I was sick. That this is what I’ve dealt with for years.
I wish I wasn’t dying. I wish I could be happy. I wish the world I knew wasn’t the world I live in.
I wish a lot of things.