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?
Sometimes I feel so bound by my skin and bones. I wonder how it came to be that I was trapped by the very thing that makes me alive. My body feels like a prison and my disease the warden who lords over everything out of my control.
It’s amazing how you can feel completely alone in a world full of people. I have so many in my life who care for me and help support my medical needs. But when you have an illness that is more severe than most doctors have seen, how can you expect regular people in your life to really understand? Yes, they nod and listen to your answers to their questions. The polite questions that broach just enough of the topic to feign interest, but vague enough to not beg a lengthy answer. At least that’s what most hope. The problem with autoimmune disease is there is no simple answer. You try to answer the way you think they’d like, but their eyes glaze over after a minute. So you learn to clip your explanation to something short and perfunctory, knowing full well it doesn’t even uncover the tip of that iceberg.
This is one way you can start to feel really alone in your body.
Your doctors can’t even figure out why you’re so sick, can’t explain why as time goes by more diagnosis’s are added to the list, why every medication doesn’t make a dent in your pain. They have no idea, and you have no idea how to explain what your body has become.
Sometimes I sit by the window for hours, staring at the birds in the garden below. My jealousy of their absolute freedom sits heavy in my throat, like a dry piece of bread I can’t swallow. I listen to music without hearing the lyrics, barely comprehending when one song ends and another begins. Yet the sound soothes me. Reminding me that other people have felt as I do, trapped in their bodies and minds, sharing their feelings through melody, as I do with words.
I watch those birds, extending their wings, turning their faces to the sun, free to fly where they choose. I sit and watch them, as I watch my own hands curve and deform from pain. I wonder if they feel as we do, fear as we do. Do they sit and wonder how they fly and why? Are they alone in their minds as I am, wondering when will be their last flight?
This morning I start treatment again, after a 4 month hiatus while moving and settling in another country. It’s been a long time since I’ve had medication in my body that actually helps my Rheumatoid Disease, as opposed to just put a drug band-aid on it like steroids do. Four months is a long time to go without critical medicine that helps your mobility and pain.
Normally, I am pretty open with others about what treatments I am on, preferring to be upfront about everything. I am not ashamed or embarrassed that I used opiates for a long time when the pain was too much to bear. I won’t lie about the fact that four years of steroids caused my weight to go up so high that I didn’t recognize myself in the mirror. I am also not going to be bullied into the fact that a lot of people don’t like when I use the term chemotherapy to describe my treatment.
This is one of the key issues that we as patients deal with in Rheumatology. Not many can grasp the fact that our diseases are very serious and can take lives. Everyone just assumes, because it’s more well known and talked about, that the big C is the really bad one out there. But Cancer is not the only thing that kills! Many die from complications of Rheumatoid Disease and autoimmune diseases. The numbers would shock you. But because it’s not cancer, or you haven’t heard a lot about it, it can’t possibly be as deadly right? WRONG.
I am part of a very supportive group on Facebook for women suffering from Rheumatoid Arthritis/Disease. We were ripped apart about a month ago by a sickening argument over using the term chemotherapy when talking about some of our treatments. An alarming number of women were very negative about the fact that some of use the very name our doctors themselves speak. Angry that despite the fact that we are in fact on chemotherapy drugs, and go through many if not all the symptoms of dealing with it, we shouldn’t be allowed to say “I’m on chemotherapy”. As if cancer patients are the only ones with the right.
Here’s where I get angry. This isn’t the damned Pain Olympics. It’s not a competition on whom is more sick and who can have what treatment! We are all sick! Some of us dying! Have some fucking empathy!
My doctors, including my Rheumatologist, all refer to Remicade as a “chemotherapy drug”. Before starting a round of infusions, I am given the same list of side effects and ailment symptoms that any other patient on chemotherapy gets. Infusions, while helpful to my RD, are brutal on my body. They make me nauseated, I vomit, I sleep for hours with no real rested feeling in sight, I lose weight, my hair falls out, and my skin turns white and crepe-like. But it’s not cancer related, so it’s not really chemotherapy right? WRONG.
If it’s not really chemotherapy, then why has my Lymphoma and Cervical Cancer gone into remission after being on it? If it’s not chemotherapy, then why do I experience the same side effects as those with the big C? If it’s not chemotherapy, then why do ALL of my doctors use that term?
Because…. It IS Chemotherapy. It may not be the same doses as different diseases and illnesses, but it’s the same drug. It’s a drug that helps many people to live better lives, that they may not be able to have otherwise. It helps me. That’s all that matters. I have the right to call it what it is. It’s chemotherapy, and it’s saving my life.
So, today I will make my way down to my local clinic. I will be weighed, have my temperature taken, and put into a bed. I will be monitored like a hawk, because these are serious drugs. Four hours later I will emerge, exhausted beyond comparison to anything I’ve ever experienced, nauseated and yet hungry. I will go home where my mom will watch me for 24-48 hours to make sure I don’t get violently ill-it’s happened many times. I’ll barely keep my eyes open while I attempt a few bites of food and sips of water, before falling back into coma-like sleep for days. I’ll continue to lose weight, dark circles forming under my eyes, my skin thin as paper, more hair falling out with every shampoo and hair brush. But I’ll be closer to pain free than I ever have been.
I have Rheumatoid Disease, and I’m on chemotherapy.
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.
Inigo Montoya shared this line with us in the cult classic The Princess Bride, one of my favorite and also least favorite movies. You may wonder how someone can love and hate a movie at the same time, but it’s not much different than how we love and hate other parts of our lives… I love tomato soup but hate marinara sauce. I love the beach but hate the sand.
For me, this line is indicative of how I feel when people offer support or help, but don’t follow through on the promise. It’s in fact one of my biggest pet peeves. The best memory I have of this annoying occurrence is through the actions of a certain ex-boyfriend of mine. He would constantly make promises to me, and then never follow through. For example, on one Valentine’s Day, he told me that my gift was that he wanted to take me to this old black & white theatre in town that played old movies, kind of like an old fashioned romantic date night. I was overjoyed by this idea, reveling in the thought of how romantic my man was. I told all my friends about the lovely date he proposed, finding such satisfaction in the idea of my “gift”. But then time passed, and he never initiated the actual date he had told me about. This was when I first realized that he was one of those people that thought that stating the idea/plan/date was enough, and that initiation of said idea didn’t need to happen, so long as he felt generous enough for just offering. God, that got old real quick…
I actually use this irritating ploy as a way of gauging the authenticity of people I come across now. I no longer accept offers at face value, concluding that an offer isn’t real until followed through on. Alas, since falling ill four years ago, there is no offer made more than the promise of support. And this is where I want to invoke Inigo Montoya every time.
What exactly is your biggest pet peeve, you may ask? Hearing this:
“Please don’t ever hesitate to call me if you need help.”
“I could help drive you to the doctors office if you ever need.”
“Call me if you need help picking up groceries or running errands.”
There are more versions of these statements, but I think you get the picture. But they are always, always followed by “It’s no problem at all, I’m just glad I can help.”
Now I know what you’re thinking, “This girl is ungrateful. These people are just trying to help her, and she’s complaining.” Oh, if only that were true, but if it were, I wouldn’t be regaling you with this story now would I?
In the early days of my disease, I was always so grateful to hear these promises of support. They made me feel like I wasn’t alone, that I had so many people that I could count on. That is, until I attempted to collect on the offers…
Now at first, I thought I must always be catching people at the wrong time. That of course must have been the reason they turned me away. So I started to ask for help here and there when I thought the time was more convenient. But even then, my request to take people up on their initial offers of support, were often met with short responses in clipped agitated tones. Or even worse, comments dripping in disdain that sounded like they were answering a smelly homeless person, asking for an extra bucks change, as opposed to me, a friend they’d known for quite some time.
Like I said, it took me awhile…
Eventually I figured it out, these people were just like my ex-boyfriend, and they fed hungrily on the feeling of being a benefactor from just the offering of help. For them, the offer alone was enough to make them feel like they had done a good deed. They’d offered someone in need their help, and that in turn made them feel generous and kind. Hurtling their karma in the right direction, and allowing them to feel philanthropic. But if the person in question turned around to collect on that offer, instantly they would feel annoyed and pressured, irritated that they would have to now make time to do something that they themselves offered in the first place. This annoyance that they felt entitled to feel, could then allow them to take a step back from the friendship. They could now tell themselves that they had been generous, and that it was being taken advantage of. While in reality, they hadn’t done anything but make themselves appear petty and untrustworthy.
Now I’m not saying all people are like this. I do have wonderfully supportive people in my life. People who have gone above and beyond to help me, to support me, to love me. I am eternally grateful for their kindness. Although, I do find it amusing that the most generous people are often not whom you might normally expect. But that’s okay. Their generosity and support make me realise more now than ever, that sometimes the family that chooses you, the ones that come from all walks of life, are the ones that make the most impact in yours.
But on the path of never ending life lessons, don’t ever assume “I can” means “I will”.
If I’m in pain all the time, you may ask is it even worth it, to do the things that I do.
If it’s so painful to run errands, pick up your meds, and go grocery shopping, why do you do it?
If you’re in so much pain, then why get dressed and put make up on, and go out into the world, why not just stay home so that you can sleep and sleep?
If the sickness is as bad as you say, then why bother getting up every day, why don’t you just stay in bed?
If you’re in as much pain as you say, why are you not in a hospital, why aren’t people like you talking about how much pain they are in, and why have we only heard about it from you?
If your disease causes as much weight gain as you say, how come we haven’t seen in it others?
If is not the question you should be asking.
Because IF you truly listened, watched, and heard, you would know the answers to your questions.
That if I didn’t force myself out of bed and do the things I do, I’d become a prisoner inside my body. That if I stayed in bed I would get sicker and sicker as hope would be lost. That I’ve been to the hospital several times already, don’t you remember when I told you? That there are thousands of people around you every day that suffer from sickness, pain, and weight gain due to illness, but that all you see is fat, and so you judge without question.
If you really wanted to help instead of judging, you would look at me with eyes wide open, and see my reality for what it is, instead of judging me for something you refuse to understand.
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.
Today I read a post on RheumatoidArthritis.net about the love and comfort that pets can give us when we are ill. And I agree, that couldn’t be more true. Sometimes, I wonder what my life would be like without the comfort and love that my two feline fur balls give me day to day.
When I first adopted Astrid and Aureus, they were only four months old, and had personalities wildly different from how they are now. I had just made the (super unfortunate) decision to move in with my partner at the time, and we had made the (very compulsive) decision to adopt cats after seeing a sign for Humane Society Adoptions at our local Petco. Looking back on that day now, I’m surprised I couldn’t see that as the beginning of our end… But that’s another story for a day that involves tequila and the reminiscing of bad decisions.
Anyway, we were at Petco, and they were allowing people to play and pet the cats in a small room at the back of the store. My partner took an immediate liking to a very friendly little ginger cat. He sat holding the tabby in his lap, unable and unwilling to move for over an hour. It was love at first sight. We decided then and there that the ginger was coming home with us, but I hadn’t found a second cat that pulled on my heart strings. I didn’t want the first cat to be lonely, and I didn’t want to bring home a second cat later on. If we were going to get cats, we were getting two at the same time, so as not to have to deal with introducing two cats from different shelters later. Cats could get very territorial, and introducing a new cat to a house that already has one is a long stressful nightmare.
So I spent time holding each of the other eight cats in the room, trying to decide which one would be a good fit for me. Most of them were 3-6 months old kittens, and had just been “fixed” the day before. And there was one older black cat, whom was adorable, but we were there for kittens. Finally I spied a very shy black and white cat, hiding behind one of the cat trees. She was very skittish, and the Adoption Agent told me she was a rescued feral kitten who’d been living under a dumpster. While my partners cat was an “abandonment”, given back to the Humane Society once he’d grown out of the small kitten phase. Tears filled my eyes and the choice was made. These two were destined to come home with us.
A year later, when I moved out of that apartment (and relationship), both cats came with me. Aureus, the ginger male, and Astrid, the black and white “Poky little kitty”. They’ve been with me ever since. Aureus, who originally was a super cuddly love bug, has grown into a large and lazy ginger tom. And Astrid, my shy and skittish little girl, is now Mistress of the House, always looking for a cuddle and some treats.
I love my two fur balls, and not only because I’ve always been a cat person, and have kept cats since I was a small child. But because they are really the most empathetic and loving creatures to have around. My cats always know when I’m not feeling well. In fact, on quite a few occasions, they’ve woken me in the night when they’ve sensed something was wrong. It’s usually just before I’m about to have a pain flare, or be hit with a severe migraine. Because of their kitty alerts, I’ve been able to take an extra dose of steroids, or pain killers. Or I’ll get up to use the bathroom and grab a full glass of water in case it’s hours before I’ll be able to get up again.
They aren’t just supportive in the practical sense. Loving my cats, watching them grow, and sharing their warm kitty purrs, well it just puts me in a good mood. When I’m down because the pain is depressing, or I’m feeling alone because of the nature of my disease, I know I can always come home to these two. No matter what, I always have my loving fur bombs to cuddle and love. They lift my spirits, sometimes when nothing else can.
I know a lot of people put stock in how great dogs are. Seeing-eye dogs are great for the blind. They have those dogs that are trained to sense when their owners blood sugar is low, for those with diabetes. And that’s great for those people. But what I think would really do the world good, is more cats for comfort. There’s nothing better than holding a purring cat. Or feeling sleep for an afternoon nap and waking up to see that your two cats have joined you for shared fuzzy snooze time. There’s something fantastically comforting about your cat pushing their butt under your head so that you can have your very own purring feline pillow.
Being sick can get really hard to handle some times, and I mean mentally as well as physically. But I think every day gets a little easier to handle as long as I have my two furry kitty bombs by my side.
Except when I get a tail in the mouth… that’s not always so fun..