After you’ve been sick for awhile you start to be confronted with questions from those around you. See, despite their desire to be supportive, most won’t really understand. Some may not even believe you, not that they would admit that to your face. They look up Mr. Google and find what they want or would prefer to believe.
That’s when the “cure” conversations start. We all know which ones I mean. The diet fads, the magic moon rocks, and the stories of their sisters best friends cousins hairdresser having what you have and was cured by wheatgrass juice. As if we haven’t tried everything under the sun not to feel this way. As if all of us chronically ill would rather live in sickness and pain than live a full healthy life.
Just a heads up for those of you reading this that are in that group.. We do not sit on couches watching Netflix all day and eat bonbons. Most of us can’t work because it’s too hard to stand/sit all day and not be in pain, or fall asleep. In 2014, my employers forced me onto disability because I didn’t want to stop working. Having to file for Social Security was one of the most humiliating things I’ve ever gone through. A 33 year old women standing in court begging for someone to help her before she ended up living in a box.
FYI: NO SELF RESPECTING PERSON WANTS TO GO THROUGH THAT.
If only you could see how often we wonder why this happened to us. Those of us who were healthy and fit when we were diagnosed…we struggle with what our bodies have become. We can’t exercise, we can’t sleep, we gain weight, we lose it, and it’s nothing to do with our diet. Our bodies are destroying themselves from the inside out and we are forced to watch.
So before you ask someone “Why are you sick?”, maybe take a moment to think about what you’re asking. How can you judge us and our bodies when you have no idea what we are going through? How do you expect us to answer when our doctors can’t even explain why.
I have Rheumatoid Disease, Osteoporosis, Lung Disease, and Lupus.
Why? Well, I don’t know. Wanna know what I do know?
I know there is no cure.
I know that I may live a shorter life span.
I know that my body can only survive with chemicals that are poison.
And that I am doing the best I can with what I have and what I know.
That’s The Why.
It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.
Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.
My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.
So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…
The last memory of my other life.
The life I had before this was all I knew.
A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.
Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.
It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.
I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.
But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.
Something has been really bugging me for the past few days, and it took me awhile to be able to put it into words here.. This time it’s not so much about what I deal with, but more about how others deal with me. Or rather, us, those who are sick in their youth.
When we were little, we were taught to always respect our elders. Its like a mantra that is ingrained in our brains since infancy. I couldn’t tell you when I first heard it, but its been repeated to me throughout my entire life. And I get it, being respectful of your elders makes sense. But how did that start? Why was it only ‘be respectful of your elders’ and not taught just to be respectful of everyone? Because now I fear, that in teaching everyone this ideal, we’ve given some a false sense of superiority. Like bad behavior is okay if its from the elderly because somehow they’ve earned it?
Also, what is the rule for the elderly then? If all us younger folk have to be respectful and gracious to those older than us, what do they have to do towards us? Anything? No? Here lies the problem. It may not seem like a problem for most, but for those of us who are under the age of 60, and are living with chronic illness, it is one. Most of the elderly that I have been in contact with since becoming ill have absolutely no regard or respect for the fact that I am sick. They either don’t believe it, or flat out ignore it. Because somehow, I couldn’t possibly be ill or disabled if I don’t carry a senior citizens card.
My first example of this is from a couple of weeks back when a friend and I were outside a local mall. We were sitting on a bench eating ice cream cones in the sun, and watched as an older couple in their 50’s were pushing a young woman in a wheel chair who looked to be in her mid-30’s. It wasn’t clear what the young woman’s disability was, but her parents (I’d assume) were helping her sit at a table of an outside cafe adjacent to our bench. The older couple looked tired, but were diligently helping their daughter whom clearly couldn’t walk. I don’t know what it was about this scene that made me smile. Maybe just a nice reminder of support from loved ones, for those of all ages with disabilities. The smile faded however when an much older woman walked past them, and decided to speak her mind on how she saw the situation. I didn’t hear everything, but I did hear the older woman tell the young woman in the wheelchair that she should be helping her parent out instead of the other way around.
I was outraged. Especially, since this was not the first time I’d seen these behaviors. In the almost five years since I was diagnosed, I have been confronted with this quite a few times. And by this, I mean older people than I mouthing off at me or other young disabled people, about how we can’t be sick/disabled and shouldn’t rely on our elders.
I’m sorry, I didn’t realize there was a rule about not being sick before having wrinkles…
Another example of this happened to me just the other day while at the bus stop outside my local grocer. As I was waiting for the bus, I watched two elderly women in their late 60’s-early 70’s push their shopping carts past the sign that forbids carts from leaving the premises. They crossed the street, went down a block, and stopped at my bus stop where they abandoned the carts outside the front door of a local clothing store. A salesperson came out and while he seemed visibly annoyed, said nothing, and proceeded to push the carts back to their home. The women stood next to me with their grocery bags, and as the bus came into view I signaled the driver to stop. Now, I was taught to respect my elders, and I always let them get on the bus first. So, as the bus stopped and opened its doors I stepped back politely. This was not necessary however, as one of the women physically pushed me back with her arm, causing me to stumble, and said “respect your elders”.
ARE YOU F*CKING KIDDING ME?
How is pushing someone you don’t even know, whom politely stepped aside for you, and then barking at them to be respectful, a gesture to be respected?? The bus driver asked if I was alright, and after picking up my dropped grocery bags, I boarded the bus and sat in the rear, as far from the rude lady as possible. They then spent the next five minutes I was on the bus, talking about how rude young people are and how they need to learn respect. This is where I draw the line.
No, I did not say something to the rude lady. I did, however go home and have a long think about how I would approach this blog.
Here’s the thing… Respect goes both ways. It shouldn’t be something we teach kids to follow just based on age. Because somewhere down the line, this ideal got warped, and not just in the eyes of youth, but in elders as well. Of course, I know these were isolated incidences. And not every single person over the age of 60 is rude to anyone younger. I have a lot of family and friends in my life whom have always been respectful of me, despite my age or disability.
But at what point did people of a certain age start thinking they were superior just for reaching that age? And at what point did the idea that a young person who is disabled, have less rights than someone who is elderly? Even back when I lived in Hawaii, and rode the bus there, I was often shamed by the elderly for using the disabled section on the bus. In their eyes I was too young to be truly sick or disabled. Like my illness didn’t matter because I hadn’t lived long enough.
Those of us whom are young and battling chronic illnesses should have the same rights as anyone else, age be damned. We shouldn’t be shamed by others for being sick, because trust us when we say, we don’t want to be. We don’t want to be using canes or wheelchairs, it embarrasses us that we have to use disabled placards on our cars, and park in special parking to get closer to an entrance. We didn’t sign up for this, and we had no idea it was coming, unlike old age. We don’t ask people to respect us, nor do we make a big deal about it in public. And we don’t teach kids to respect the ill or disabled, but we should.
Instead of teaching children to respect their elders, why not teach them to respect everyone?
And to the elderly who think I’m too young to be sick and disabled…I agree. I am too young, but that doesn’t mean I’m not. So please respect that.
I’ve been doing a lot of inner reflection lately, and it seems to me that those of us living with chronic illness do a lot of destructive thinking. I don’t think it’s on purpose either. I’m not talking about the inevitable depression and grief that comes with living with chronic disease, that’s a whole other can of worms… I’m talking about the depression we let ourselves slip into.
Rheumatoid Disease is shitty enough on its own, without having added Osteoporosis, Lupus, and Lung Disease to the mix. While I have accepted each of these as they have come, and deal with my diagnosis the best way I know how (smiles and realistic expectations), I find myself under a rain cloud. But it’s a rain cloud of my own conjuring.
There is a point that I think we all go through where we have had enough. The pain has become too great, or we lose support, or medical help, or all of these things, and we start to feel like we want to give up. I’m not talking about ending our lives, but more of an acceptance of defeat. At one point in our illness we accept that it can’t or won’t get better. It seems easier to accept that our disease has won, not only by conquering our body, but also our will.
I realise that recently I have let myself get to this point. And I really do mean I let myself. At some point my loneliness joined forces with the disease destroying my body, and they decided to get married. And instead of dealing with my illness while trying to stay positive, I let myself slip into depression.
See, most people think we (the chronically ill) keep to ourselves because we want to be alone. When most of the time the reality is that we just don’t want to bring anyone down with us. We keep our feelings, pain, and sadness within, convincing ourselves that it’s better this way. In my case, I like to take it a step further by emotionally cutting myself off from others. I guess my logic is that I don’t want anyone feeling sorry for me, or treating me like I’m broken. But in doing that I end up putting up walls, especially around my heart.
I haven’t been in a romantic relationship in a long time. I’m talking years. Wanna know why?
I wouldn’t let myself.
In hindsight I now see that my logic was really flawed. Because in keeping people at arm’s length, I not only hurt myself, but others around me as well. I started to use my disease as an excuse to not live my life. Not in the giving up sense, but I did throw away opportunities to have meaningful relationships with some great people because I justified to myself that I was saving them from dealing with my health issues. In truth, I was just building my own personal purgatory.
It’s taken me a few years, but I’ve recently seen the light. Maybe not the light at the end of the tunnel, but at least a flashlight that will help me find my way. I realise now that letting people in is important. Sharing how I feel is important. It may not always get you the results you want, but it sure as hell is better than keeping it bottled up inside. I need to not let my disease define me as a person, and I have to remember thank don’t have to walk in this life alone.
No matter how many days I have left, mine is a life meant to be shared. I will climb out of the purgatory of my own making. I will remember I am strong, beautiful, and worthy of happiness.
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.
Lately, I have been really feeling the solitude that my illness has wrought on me.
I am aware that I am emotionally not alone. I know that I have friends, and family, and a fairly large support network of doctors and medical professionals. I know that if I was having a bad fatigue day, a friend would be just a call away to come over and lend support. If I was having bad pain, and needed assistance bathing or eating, my mom would be over as soon as she could. If I was stuck in my head about the severity of my disease, I could call my therapist and we could talk through my struggles with my reality. If I just needed a friendly face, my sister is available for a video chat and emotional support. I am not alone emotionally.
One could even make the argument that I am not physically alone in my illness either. Over 1.3 million Americans are affected by Rheumatoid Arthritis, and it affects almost 1% of the worldwide population, according to the latest statistics from rheumatoidarthritis.org. As well as millions of others whom suffer from countless autoimmune diseases, chronic fatigue, and chronic pain. Yes, we all share a common link in our fight against invisible illnesses.
But no one can say they suffer from exactly what I do. No one else out there can say they are affected by the exact same diseases and illnesses that I have, in the exact same way. Because despite our common threads, we are all fighting our own battles within our bodies. No two people suffer the same way. We are as individual as every drop in the ocean, and that can be very isolating.
Over four years ago I was diagnosed with Severe Rheumatoid Arthritis from the get go. That alone was a tough struggle for me as I felt like I wasn’t given time to even get used to the searing pain. One day I just woke up and it was there, and its never left.
A year later I was forced to stop working by my employer and put on Temporary Disability Insurance, before eventually being officially “laid off”. By that point I was walking with a cane, and taking very strong opiates to calm the pain that I felt in every joint in my body. With a heavy unbelieving heart, I filed for Social Security from the Federal Government.
A year after that I was diagnosed with Severe Osteoporosis, my doctors telling me my bones tested like those of an eighty year old woman, and not of a woman of thirty-three years, my actual age at the time. Know how I found out about the Osteoporosis? By receiving a bear hug from a friend that cracked my apparently brittle ribs. Yep, that’s right….a HUG.
Within six months of the Osteoporosis diagnosis, I was sent to see two new specialists, a Cardiologist and Oncologist. After a biopsy of my esophagus, a tumor was found to be benign, but I had signs of early stage Lymphoma. I’d also started having chest pains congruent with Pericarditis, a heart condition attached to Rheumatoid Arthritis. New medications followed, as well as a mammogram, an MRI, multiple x-rays and CATscans.
Eventually, due to the inflammation in my body, and my weakened immune system, I landed in the hospital for a severe Cardiac event. It resulted in my being placed In the Intensive Heart Care ward at Queen’s Hospital. During my time there I suffered through Severe Pericarditis, including three minor heart attacks. I was thirty-four years old.
My doctors told me if I got any weaker than I was, and if they couldn’t find some medication that would work on calming my inflammation that I wouldn’t make it to my sixties. Truth be told, I was given a hopeful ten years.
For a change of climate, and pace, I made the decision to come to New Zealand, where I am a citizen, in early 2017. I thought with a different atmosphere, and medical system, that perhaps I could finally find a way to extend my life. By March of this year, no medications had worked for my diseases, and I was getting increasingly worse. My body was either intolerant of the medications available, or allergic to them. It felt like time was catching up to me. I hoped that somewhere out there beyond the ocean was the key to my mortality.
By June of 2017, I had already started a new form of chemotherapy medication for my disease that appeared to be working for me. Physically I felt less pain, and had more pep in my step. I was starting to be able top exercise again, and I had lost a lot of the steroid weight. So, when I met with my Rheumatologist after a series of tests to check my condition, I was feeling very hopeful. It was then that I was informed of my new diagnosis’ of Lung Disease and Lupus.
There are times when I can feel so very small in this world. Like a drop in the ocean. The solitude of my illness can be so overwhelming. No one will ever quite understand what I am going through, or how this feels. No one can tell me they know how hard it is to wake up sometimes knowing that your own body wants you six feet under.
I don’t quite understand how these things work, but I do know that it pretty amazing that I have not completely fallen apart by now. There are days where I can wake up and not be fully assaulted with the gravity of my situation. I can have a shower, get dressed, and face the day, rain or shine, with a smile on my face. I can see my mom, or friends, or just take a walk and feel happiness in my heart.
Then there are times where I look in the mirror and wonder when my last day will be. I wonder what awful thing my body is doing today to destroy itself. I can lay in bed for hours staring at the ceiling in silence. No tears, no anger. I contemplate my mortality and the awful unfairness of my life, like I’m watching an old movie with no sound. Days like that I lay there and contemplate my life as if I were a drop in the ocean. I wonder what it will feel like when I am swept away by the current and I have let go. Today is not that day.
But it will come. Sooner than I would like.
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.