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.
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.
For over four years I have allowed myself to entertain the idea that maybe one day I would be well. It would usually come after periods of having little to no pain flares, or a burst of energy after weeks spent bound to my home. Small fantasies if you will, of seeing myself hiking again, or being able to travel more of the world like I’d always wanted to. And then these visionary bubbles of hope would be popped every time a doctor would tell me I was getting worse, or that I’d procured another illness, to add to the ever increasing pile of shit I was already dealing with.
One of these frustrating moments was just a couple of months ago. It was on the same day that my rheumatologist told me I could re-start Remicade, a drug that had started working for me just before I left Hawaii. In hearing this news I was in such a great mood. Having only received three infusions before leaving the island, the drug had already produced amazing results, doubling my energy, and lessening my pain flares. I was stoked.
However, that excitement was short lived when my doctor informed me that recent test results showed I had developed Pulmonary Fibrosis, a lung disease that can be fatal. It turns out that the severe inflammation that Rheumatoid Disease caused in my body had produced scarring on my lungs. It wasn’t yet determined how bad it was, and I was sent for more testing including blood labs and x-rays. On top of that it was also concluded that I likely had Lupus, another autoimmune disease, that my doctors had suspected for many years.
I was devastated. Why was it that every time I started to feel like my disease was turning a corner, I’d turn that corner and walk smack into a brick wall?
Depression came on swift wings with the winters rain, and I started to seriously doubt the years I had left. Research came and went. I talked to my therapist in what seemed like a never ending loop of what if and why me‘s. Every part of my life looked gray, as if I was wearing Eeyore glasses.
But just as nature surprises us with change, so did my mood. The storm in my head began to lift, and with my Remicade infusions, so did my heavy heart. I hate to sound like a cliche and say that my rose colored glasses faded away and every thing seemed okay again, but that’s really what it was like. Without knowing how or why, I found my happiness again, and moved forward at a surprising pace.
I started to exercise a lot more, having finally found the energy to do so. I took long walks that went miles, and explored areas I’d only known as a child. In one of these walks I stumbled across a Cat Lounge, an awesome place where you could literally spend hours petting cats, and resting as they took naps on your lap. Some days, I would just walk up the hill behind my house to a little cafe, sitting by the window sipping hot chai lattes, and writing for hours.
With this burst of new energy, I started to see friends more often, even venturing out more on weekends. For the first time in over four years I was really feeling like my old self again. I even went on a couple dates, and while none of them panned out, it felt good to be out in the singles world again. Energetic, confident, and hopeful.
Now, you’d think that this lovely change in my attitude and physical self would have been celebrated by others. I figured after years of hearing my depression over my illness, lack of enthusiasm for life, and the dreariness of daily pain, that friends and family would rejoice with me that I was starting to feel a little better. Especially with the fact that I had been able to lose 80 of the 90lbs gained on steroids and pain management medications. I mean I wasn’t cured (there is no cure), but it felt good to feel good, even if only for awhile. I knew that there could be periods of wellness, followed by periods of illness. But I wanted to embrace the wellness as often as I could, and make the most of it, while I could.
To my surprise, not many in my life shared my zest in this. You know that phrase “misery loves company”? Well, this was a cracked out version of that. I received a lot of “Well, don’t get your hopes up”, “You’ll probably be sick again next week”, or my favorite not favorite “You could still gain the weight back”.
For fuck’s sake!
Look, I’m quite aware that I’ve been sick-its my body! I’m quite aware there is no cure-I have seen more than a few doctors! And I am beyond aware that my illness varies from day to day, if not hour to hour. But do you understand that when you have a chronic illness that you’ve been told may very well kill you, any day or moment where you feel genuinely well needs to be enjoyed? Can you please let me relish this time where my joints aren’t screaming at me, and I don’t want to cry at the loneliness, and I can just be happy if only for a moment?
Its like I am not allowed to feel well, even if its for a short while. I am the sick person, the sick friend, the sick family member. If I display even a hint of joy, energy, or confidence, then suddenly its this big deal. As if maybe I was faking it the whole time-because yeah, I just faked four years of excruciating pain and fatigue, for sympathy. Instead of letting me be happy, I am berated with “I guess you’re not that sick after all” or “I thought you were too sick to get out of bed”.
For fuck’s sake.
I am NOT sick 24/7. Yes, sometimes I can be sick for days and weeks on end. Sometimes it feels like my entire life is me standing under a rain cloud that follows me everywhere, except instead of rain and thunder, I get new diseases, cancer scares, and Osteoporosis. That sometimes its like I’m in a crowded room screaming and no one can hear me or cares.
So you’d think that when I am feeling good people would be happy? Nope. In the land of Chronic Disease, if you’re not sick and miserable all the time, then you’re not really sick. Or you’re being too optimistic and you need to be brought back down into the ditch of incurable misery, and stay there.
Well… I say NO.
I am not sorry that I don’t look sick all the time. I am not sorry that I don’t feel sick every moment of every day. I am not sorry that you can’t be happy that I can get a moment of peace every now and then. I am not sorry that my new medication makes me feel better some days. I am not sorry that I am not the vision of sickness that you need me to be.
Some days I feel bad, really bad. Some days I feel like I want to give up and die, seriously. There are days when I wonder how I’ve made it as long as I have. I often wonder if it would truly be better if I let my diseases consume me. Yes, it does get this dark inside my head. This is life living with chronic illness.
On the days where the pain wanes, and the sadness cloud clears, and I feel like I’ve woken up like a normal person… let me have that. Enjoy the pain freedom with me. If I’m in an optimistic mood, be optimistic with me. Be happy with me, if only for awhile. Don’t make me feel like shit for wanting to spend one day, one hour feeling like a normal woman. In a life where I don’t know how many normal days I have left, let me appreciate the time given.
Let me be okay, if only for awhile.
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.
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.