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.
Even before I got sick and my whole life turned upside down, my dad would tell me not to bother with relationships and love. From a young age he told me to concentrate on school and work, that I didn’t need to worry about the complications of romance. Despite my contradictory feeling on this matter, I think it really affected me subconsciously throughout the years. we are our parents children, right? Despite our feelings on how we swore to not be like our parents, to not make the same mistakes, we do, don’t we?
My parents divorced when I was very young. My mom raised me primarily, and I saw my dad every other weekend while we lived in the US, until my mom moved us to New Zealand when I was 10. Despite my dad’s feelings on the subject, I didn’t like spending time with him when I was young because he was so strict, and at times cold. Its no surprise to anyone that really knows me that my dad and I have not often seen eye to eye. He has always voiced his opinion on how I was raised, how he felt my mom kept me from him, and his general dislike of the situation after the divorce. No matter how many times I’ve told him I was the one that didn’t like spending time with him when I was little, and that I would beg my mom to not let me go to his house. He “forgets” every time I try to stand up for my mom and set the story straight, and remind him of who left whom. He left. Not us.
I think a lot of my fear of him when I was growing up was how much his “advice” felt like insults and put downs. To this day, he will always stand by his word that he was being parental, and voicing concerns. But when you’re 13 and your dad asks if you’re pregnant and pokes at your belly, that barely extends from your hips, well you tend to fear the comments and advice. To be clear, I was NOT pregnant, I was growing into my body as any teenage girl would.
When I reached my mid-teens was when the “you don’t need a boyfriend” comments began. I was not to be deterred, and was as boy crazy as any hormonal girl of my age. But, when it came to the time of liking someone, I found myself to be quite commitment phobic. This went on long into my early twenties, and even gave me problems in my first long-term relationships. For years I believed that I wasn’t phobic of relationships, that I was just being sensible in not attaching myself to someone. It wasn’t until I found a really good therapist that helped me primarily in dealing with my disease, that I started to understand what had happened.
Subconsciously, I was following my dad’s advice for years, decades even. When I started working in my early twenties, the comments changed from “you don’t need a boyfriend” to “you don’t need to worry about marriage”. Now, I will never really understand why he said these things to me. I don’t know if he truly feels that relationships are a waste of time (he’s in his second marriage, so I can’t see that being an anti-commitment comment), or rather that he thinks I just shouldn’t waste my time. Or maybe he thinks I’m incapable of dealing with them, or that there are more important things I should be concerned with. Which may make more sense now that I’m sick, but these comments have been made since I was 10…
My point is, despite my feelings that I always wanted relationships and eventually marriage, I think his comments subconsciously deterred me from having them. Or rather, having healthy relationships.
Now, I am 35. I suffer from several chronic illnesses, one of which will eventually lead to my demise. And I am alone.
With my illness comes the desire to not suffer alone, and I wonder if I’ve lost my chance to find someone. Days pass into weeks that pass into months, and the loneliness sometimes feels unbearable. Yet now, instead of that incessant nagging feeling that I shouldn’t worry about relationships and marriage, I now incessantly worry that I shouldn’t bother with them due to my shortened life expectancy. Is it fair to engage in love with someone when I can’t give them forever?
I have no one to blame but myself. I listened to the wrong advice for a long time, and now that I’m sick, I worry that I lost my chance to enjoy something I’ve always craved, but never let myself truly have. I can’t get over the feeling that it might be unfair to want a lasting love, if that love might only last five to ten years depending on my hypothesized life expectancy.
These are all what ifs and maybes. But sometimes I wonder if my life would have been different if I didn’t grow up with the whisper in my ear that relationships shouldn’t matter to me. Everyone deserves love, even if they are lead not to believe it is so. Both of my sisters have both married, and here I am dying of a disease that leaves me feeling more alone that anyone can imagine. Sometimes I wonder why my dad told me I shouldn’t bother with romance. Was romance to be avoided by everyone, or just me? And why was I undeserving?
As someone who has a lot of time on their hands, I find myself on social media quite a bit. It’s easy as pie to just tap my phone to see what’s been posted on Facebook or Twitter, or to have a quick laugh on Reddit. Quite honestly, I probably check my Facebook status anywhere from 15-30 times a day. A bit excessive yes I know, but be honest with yourselves, you do it too! Seriously, why don’t you go ahead and count sometime… I bet you’ll be surprised at how often you do it.
I think it’s part of human nature, the incessant desire to never miss out on anything. We want to be a part of everything and anything, and we feel let down if we aren’t “in the know”. This could pertain to anything too, be it sports scores, which celebrity is shagging another, your own friends relationship status updates, or how many potato chips the girl who’s dieting in the cubicle next to yours just ate. We have to know each other’s business, secrets, feelings, happiness, and pain. It’s just the way it is. We are obsessed with information.
My own personal vice is Who has read my blog?
I constantly check my stats on WordPress and Facebook. Has anyone new read them? Did they like what I wrote, did they leave a comment? Do people understand what I’m feeling? Am I making sense? Do they connect with the words on a spiritual level, or a physical one? Or do they even read them at all?
Have you ever noticed that you can post something online like a really long status update that’s a few paragraphs, or a blog, or an article, and people click like within seconds of you posting it? What exactly is it that they are liking? Cause it’s not your post, there’s no way they read it hat quick. So basically they like that you posted anything at all. And then you have no frame of reference on whether someone truly liked what you posted because they are just obsessive “clickers”. Someone posts something and hey are compelled to immediately react to it. Drives me nuts.
But why am I really annoyed by this? I mean, I don’t write my blog for anyone but me. Seriously. I may say that I love checking my stats and enjoy reading comments left, but at the end of the day, my blogs are for me, myself, and I. They are a way for me to express my darkest thoughts and feelings. Because in a way, they don’t feel read until I put pen to paper, or in this case-stylus to kindle. When I see my words, my feelings, my thoughts, well, that’s when they become real. It’s like saying something out loud makes it real for some people, well, writing it down makes it real for me.
It helps catalogue my thoughts, wishes, and dreams. I can always go back through them and remember exactly how I felt on that one day. Just like a diary, my blog is an extension of who I really am on the inside. So maybe my obsession with stats checking is really more about wanting to validate that people around me understand how I’m feeling.
In my last blog I talked about realizing my fears. Actualizing them and understanding how they affect my life and how in reality they have made me who I am today. Before writing that blog I lived in the fear of people knowing what I’m really feeling. I was saving their feelings and making them comfortable by not sharing my truths. And for what? So they don’t have to feel bad about my disease. What a senseless waste of time that was. Why should I hide what was really going on? Why were others comforts more important to me than my own? I guess I realized I was people pleasing, something that I’ve given up in recent days. I learned through putting my feelings out there that I was doing more damage than good. Mind blown.
Life is a journey. We learn new things every day, especially about ourselves. It took me three years to learn to put myself first. That time frame sounds ridiculous when I think about it, but that was my reality. But then I put my feelings into words and made the necessary changes. That’s what my blog helps me do. Realize what needs to change, how I can grow, and make it happen through actions.
Todays life lesson and realization is that social media does nothing for us if we aren’t commiting to being real and being ourselves. You’re not doing anyone any favors by liking every single thing that’s posted, or checking statuses every two minutes. You’re just feeding a compulsion to know information that isn’t necessary for your life. What we should really be focusing on is OURSELVES. What helps us move forward and grow. My life isn’t going to change drastically if I have more followers on Twitter or WordPress. The only thing that should matter is me, myself, and I. How I live, how I learn, how I grow. Everything else is just fodder. It’s time to remember that I am here for me.
If you would like to help support me, please visit my page here to learn more about my journey. Thank you.