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.
The other day I read an interesting story on Arthritis.net about “faking symptoms”. Truth be told, at first I was a little annoyed that it sounded like someone was talking about exaggerating their symptoms because I feel like I face the stigma of that every day. People that I come into contact with are constantly second guessing what I tell them, not understanding the severity of my disease because of how I look on the outside. The constant annoyance of having an ‘invisible illness’, it’s exhausting. Everyday, even if I’m having a terrible, terrible pain flare, I look completely normal (besides the obvious Prednisone weight gain that is). The only way you could truly see if I was very ill is if I show you the pain on my face, or if I’m limping, or if you caught me during a bout of nausea.
Back to the online article.
So as I started to read this article on ‘faking it’s I realised my initial thoughts on it were wrong. The woman writing the story was indeed talking about something I find myself doing all the time, faking symptoms to make people thing I’m better than I am. I guess it stems from my pride, from not wanting to appear weak, or vulnerable, or small. But the woman was right, I do in fact fake it with family and friends all the time, just not in the way they’d think.
A good example of this is just the day before yesterday, Thanksgiving Day. I woke up that morning around 5am already crying. My pillow was wet with tears, and the second I tried to move I knew why. I was having an excruciating flare. I couldn’t even keep from crying out as I moved from my bed to the bathroom. Every step felt like my feet had been bashed in by a sledge hammer, Kathy Bates of Misery style. My shoulders felt dislocated, my hands crushed into a thousand pieces, my rib cage heavy and pained, as if the very bones were a cage for 50lbs weights that were tossed around as I attempted to move. I worried about how I was going to accomplish helping my sisters cook the big thanksgiving feast.
That’s when the faking it started. I cried while making myself a pot of tea, everything taking longer as it was agony to move at all. Then it occurred to me to make breakfast for my family since we had to get up so early. And sure, it took me quite a while to accomplish it as the pain was brutal, but an hour later Apple Croissants were packaged into Tupperware to take to my dad’s house. The mere act of that alone was agonisingly painful, and I’m not sure why I even put my body through it. The ordeal of trying to open the crescent roll tube was a sobbing matter. So why? Why didn’t I just stay in bed for an extra hour and rest and not aggravate my pained body?
Pride. I didn’t want to be seen as vulnerable or weak or pathetic. I wanted to be seen as strong and capable, someone who can overcome the odds of a severe and debilitating disease, someone who was winning.
Later at my family’s house I continued to push myself despite the pain. Swearing I could do the work even though every step, every movement, was agony. They asked how I was and I’d shrug it off with comments like “I’m fine” or “Don’t worry, I can push through”.
I took a nap in the early afternoon to regain composure for the coming evening celebration. As soon as the door was closed and locked I could be the real me again. Wipe the plastic smile from my face, let the exhaustion and pain show. I lay on the bed and slowly registered every pain, every feeling of brokenness, and continued to do so until the exhaustion took over and I passed out. But not even two hours of rest can expel the pain. Eventually I had to rise again, shower, change, and paint my face with a look that I hoped would convey “Everything is fine”.
It was only much much later, when I was home again and in bed, staring at the ceiling as silent tears slid down the curve of my cheeks, did I wonder why on earth I had put myself through that.
I’m not helping anyone, including myself, when I “fake it”. If anything, I am the cause of people thinking I’m faking it for real all those other times. My pride is damaging my credibility as a person with a severe illness. If people always see me smiling and saying everything is fine, well of course they will be suspicious of any real pain I experience. They won’t understand why I’m fine one minute and in pain the next. Because I’m showing them that it’s painful sometimes and other times it not. But that’s a lie. It’s always pain. I’m always in agony. I always hurt.
If I saw someone walking normally one day, and the very next I saw them limping and asked ‘hey what happened?’ and they told me that in fact both days they were in pain, but they were only showing the limp today, well I’d assume something fishy was going on. And that’s basically what I’ve been doing.
In my pride, I’ve not wanted people to see how truly sick I am. Last night as my mom and I discussed it, I came to the root of my problem. Yes, it does have to do with pride, and not wanting to constantly be seen as ‘sick’, but it’s also something else entirely. Something I hadn’t realized before, but was so painfully obvious.
I don’t want to be seen as the ‘sick person’ not just because it makes me weak, but also because it excludes me. Being labeled as ill automatically puts me into this group where I don’t get included anymore. Don’t fight me on this, because it’s totally true. I’ve received less invitations for group activities like beach days, bbqs, dinner parties etc. I rarely get asked out on dates anymore, which was never a problem in the past. I’m not the friend that people automatically turn to for a fun addition to an activity. And that always used to be me.
Once I realised this phenomena was taking place, I think that’s when my bout of ‘faking it’ really came to life. It was to counteract boredom. If I showed everyone I was better than I was then I would be included again. Sure enough, I was part of the laughs and stories and jokes in the kitchen on Thanksgiving. I’d been invited recently to more group social activities. I’ve even had a date recently. All because I tucked away my illness for no one to see. In a sense I hid the present me to bring back past me for everyone’s enjoyment. Everyone’s enjoyment but my own that is. Because it is exhausting hiding my pain. It’s painful hiding pain. What the hell Christine? What are you doing?
So now that I have come to terms with the stupidity of my actions… I’m stopping them. It’s time to just be me, pain and suffering and all. And if it’s confusing suddenly seeing me in a bad state all the time you can just tell yourself I was like this all along, that I hid it for your comfort but that those days have ended. I only work for myself now.
My exhaustion, my pain, my agony, will show on my face as I live it. As I experience it, so shall everyone experience me. The days of faking it have ended. I am thankful to that woman who wrote the article and brought my silly actions to light. The case of the Fake Christine has ended. Now what you see is what you get. Sorry if that’s depressing or hard to handle, but feel better in knowing it’s far less than what I deal with every minute of every day.
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When we were sick as children there was always that one person who could make us feel better. Or at least help us get through our qualms faster. It could have been a favorite aunt, a grandparent, or an older sibling, but for me as an only child, it was my mom. And when I was really sick (with a bad cold, or the flu, or maybe belly aches,) she became ‘Mommy’, and Mommy could do no wrong. She anticipated when I needed hot tea, another warm blanket, help to the bathroom, or sometimes just a hug and a channel change (our first cable box in the 80s didn’t have a remote). When we were young these relatives that helped us were more like superheroes, they could do no wrong, and they cured our ailments with a well timed cup of hot chocolate.
I miss those days. The days of waking up and only needing to holler down the hallway for help, and in flies Super Mom to the rescue. But those days are long gone.
I didn’t even have to open my eyes this morning to know it was a bad day. Every inch of my body was silently screaming. The trek to the bathroom was child’s play compared to the excruciating job of getting up off the toilet once finished. My knees said no. My hands and wrists said no. My arms and shoulders, feeling like broken bones flopping around inside my skin, said no. If only Mommy had been there to help. To soothe me with soft words and French toast.
Everything hurts. My hands are the size of baseballs, my fingers won’t bend. Crying does nothing to help soothe except bring my confused cats into the room with pleading meows to feed them more. Oh the joys of motherhood.
I want some hot tea. I want to watch Cartoon Express on USA. I want hot oatmeal and another blanket. But no one comes when I holler down these halls. The pain stays.
Gone are the days where our knights in shining armor are here to make us well. Gone are the days of walking into a kitchen to a ready made breakfast. Gone are the days that a hug makes all the difference.
Gone are the days of Mommy making it feel better. I hurt all over. And no one is here to fix me.
If you would like to help me, please visit my donation campaign at Christine Lilley’s Life Fund
I don’t like that word. In fact, when I read it or hear it, I involuntarily cringe. It’s one of those words that has a lot of different meanings, or rather different interpretations depending on the way it’s used. Whichever way, though, it’s really not a happy word.
Recently, to my dismay, I have been feeling like that’s exactly what I’ve become. A burden. When I started to get sicker, and remission felt further and further away, it never occurred to me that my predicament may turn out like this. Sure, I was very ill, but I always thought I’d be ok in the long run. ‘That’s what family is for’ was the line that played like a loop in my mind. We grow up listening to our parents or families drill into our brains that family is important, and that no matter what, they are always there for us.
‘You never turn your back on your family’
‘Your family will be there when everyone else is gone’
or my favorite gem of all:
‘If you’re ever in trouble, you can rely on your family to see you through’.
My parents divorced when I was quite young, and I was the only child from that union. My mom never remarried, though she’s had a few long-term partners over the years, including the decade long one she is in now. My father remarried before I was ten, had another child, and became a step-parent as well. So, growing up I had two families, which means two sets of everything. Two sets of values, two sets of morals, two sets of family friends and calabash aunties/uncles, and on the entertaining side (especially when I was a kid), two sets of holiday/birthday presents.
My two families could not be more different. I grew up with my mom in a house filled with fun, games, laughter, and happiness. Though we never had a lot of money, I don’t ever remember feeling poor or wanting more. She raised me to realise I didn’t need money to be happy, and that as long as I had family and friends, I was rich in my own way.
I grew up in two countries. I was born with dual citizenship for USA and New Zealand, a perk that ended in 1982, much to the dismay of one of my best friends in NZ with an American father. When I was ten my mom moved us to New Zealand to be closer to her family, which made me very happy. I was able to grow close to my grandparents, and see one of the three uncles on my mom’s side more often. Family was very important in New Zealand, and I loved that we were able to see ours so often while we were there. My grandparents helped my mom a lot when she needed it, we stayed with them when between homes, my grandma would look after me if I was sick, and we would in turn help them when Grandpa’s health started to fade. Family, to us, was a strong word, not to be taken lightly.
When I was 14, mom moved us back to the U.S. for job opportunities, and we settled back into life in Hawaii. Then I had the opportunity to get to know my other half of the family better. My dad was living with my step-mom and half sister, who was only four or five at the time. The difference between my life with mom and my life with dad is that I never lived with him, only visiting on weekends and school holidays. And to be honest, that worked perfectly for me since I’d always clashed with my dad, and on most occasions avoided him when possible. We never quite figured out how to have a healthy father-daughter relationship, as I felt most of his “bonding time” with me was filled with what he viewed as ‘constructive criticism’ on every aspect of my body and life.
My dad’s side of the family seemed so large when I was young. There were my dad’s four brothers and sister, all whom I loved and adored growing up, and then my step mom’s side of the family which seemed extensive and never ending. I never knew whom was a blood relative or just a ‘calabash’ family friend because everyone was always introduced to me as “Auntie” or “Uncle”. My step mom used to throw these great big parties and potlucks with what seemed like a hundred people wandering about, kids running through the throngs and jumping into the pool. Or instead, there would be great Italian sit down dinners with 15+ guests, and at least 6 courses of food. A lot of my memories of those meals however were my job at them, clearing all the dishes and plates and then the hours of washing up to follow. Back then, in my young mind, I felt very Cinderella-esque, and when confronting my dad on these feelings I tended to only make the scenario worse.
Not until I was older, out of my teens and into my early twenties, did I feel like I had a real connection to that side of my family. My dad and I finally started to bond in our own way, taking small boating trips together in the afternoon after I got off work, or checking out matinees at the local movie theatre. As long as we were doing activities and not actually talking, we did quite well together. Plus once my half sister hit her late teens we started to have things to talk about and bond over as well, and that’s when she and I started to become close.
So while I had a different kind of life growing up, and two sets of families to go along with it, I’ve always known the importance of “family”. Families stick together is what I always heard on both sides. Easy enough to remember. How could anyone forget?
As my disease has progressed and my options become more and more limited I can’t help but wonder about these family values that were instilled into my brain. No matter how hard it gets, or how down and out I may feel, or how helpless and homeless seem to have become the same word… I always figured I’d be ok, because I have so much family!
Or do I?
I have mom who fights for me as much as she can, but she mostly does it alone. Rides to the doctors, sitting with me during every single treatment and procedure, holding my hand every week as they poke and prod me with needles, helping my to sit and stand when my body fails to help itself. Her partner never quite understanding of what’s happening to me and my body. Wanting her to spend less time with me, and more with him. Wondering why I need so much help, why I can’t take care of myself. I see myself through his eyes, I am a burden.
I asked my dad and step mom for help and they decided it wasn’t in their best interests. Or rather, I hadn’t “earned” their help, or trust, or love. Their words not mine. I guess family is only there to the end with strings attached. I shouldn’t have to feel like I’m a burden to my family.
I wish my New Zealand family members lived closer. I’m sure they would have helped if the could. My sweet uncle even sent me money to help with my donation fund, proving that family doesn’t end at the state line. I’m so happy that I have the unwavering support of my sister and the friends that feel more like family. This whole thing has taught me that family does not just mean blood relative, but are the people who reach out and help you when you need it most.
I don’t want to feel like a burden. But I do. And I hope no one ever has to feel like this.
If you’d like to help support me please visit my donation campaign page:
“I want to live, not just survive.”
I saw that on a quote board on Pinterest the other day while looking for a clever motto for my business cards. My medical psychologist had suggested I order some cards to help promote my donation site as well as my blog, and I had found an extraordinarily cheap deal on Vista Print. 250 two sided colored cards for $12? Gee, um, ok!
Anyways, the back of the card had space for a motto and I wanted to find something inspirational for myself, and motivating. When I saw this one, I knew. It’s exactly how I feel. It’s one thing to just overcome my disease and illness, it’s another to be able to live my life with purpose and happiness again.
I’ve been thinking about this a lot recently. In my mom’s letter to me, that I posted on my blog earlier in the week, she wrote that she gets sad when she sees families together, or mother’s walking their strollers. Because she knows that’s an unlikely future for me. My doctors have told me I can’t have children. Physically, yes I could, but to have them I would have to go off all of my medications and treatments completely, which in turn would kill me.
So no family from scratch. Sure I could find a man who already has kids from a previous marriage, or we could adopt. But to have enough energy to raise children, I would most certainly have to be in remission from my Rheumatoid Disease, and no longer fighting cancer. Basically, I’d have to be well again, and I’ve been sick for so long that I’ve forgotten what well feels like. What does no pain feel like? What does it feel like to make it through the day without a hot flash? Or to exist without a daily three hour nap?
I rented a Redbox movie last night due to free coupon I received via email. (I know, I’m cheap. Only using the service when I get freebies. But even a $2 movie is a luxury these days.) Jupiter Ascending. I liked it a lot. Prob cause I’m a sci-fi geek and love anything done by the Wachowsi’s, but also because the special effects kicked ass. Anyways, of course to capture a broader audience they dropped a love story in the mix between the heroine and her sexy hero. Not too mushy, thankfully. But due to my strange mix of emotions lately, I found myself crying while watching it.
See the issue that I’ve been dealing with recently is that I’m going to be 34 in a few months, and I’m still single and alone. Throw a chronic disease into that mix and you have the perfect storm of depression. Dating is hard enough when you’re a regular healthy person. I’ve had my fair share of long term relationships that have clearly not panned out. I’ve been signed up on two online dating sites on and off for the last four years, with no winning results. Although I now have at least three really awful and yet entertaining stories of bad dates. So like I said, dating is hard.
Since my disease got really aggressive, I haven’t been able to keep up with my dating sites. I took a good half year break for awhile as I tried to find my footing with chemotherapy and my many other treatments. But I’m still alone. I have no one to come home to after a bad night in the ER, or receiving another shitty diagnosis. Sure, friends and family are supportive, but it’s not the same. We all know it. I crave the intimacy you have in a significant other.
And now as I get sicker and sicker, it feels like a future with someone is further and further out of reach. Yes, I’ve been on a few dates here and there, but in the course of being honest as soon as I tell someone of my condition their demeanor changes. No one wants to be with someone they view as broken. And it doesn’t matter how much I tell them about my optimism or activity levels. Once they hear “sick”, it’s over.
I find myself wishing I had spent more time when I was younger looking for the right person. Wondering why I substrate it seriously, and of course knowing it was because I thought I had more time. Time. That’s the real issue at the end of the day. I wonder if that’s what deters people. Their conception of loss of time with me. I mean children are off the table before we even get started. They probably see my winced and hear my clicking joints as I get up and down in front of them. I understand that a worse case scenario probably runs through their minds as they think what a future with me could be like. Wheelchair maybe? Endless doctors visits? Pain?
That must be hard for them to see and imagine. But that leaves me alone. I wish someone would look at me and see ME. Not my pain, or my disease, or what my future may hold. Just me. The fact that besides my chronic condition, I love life. I love cooking and baking. I’m a foodie, I love tasting and eating out and having food adventures. I love walks on the beach and swims in the ocean. I love travel and adventure.
I am not Rheumatoid Arthritis.
That is only a part of me. Look deeper and you will see that.
What is the point of going through all these drug trials, chemotherapy, biologic injections, steroid weight gain, losing work, being homeless, having to go through all of this hardship and stress… what is the point of making it to the other side if there is nothing on the other side?
I want to live through this, not just survive it.
I want my disease go into remission. I want to be healthy again. I want to be employed again. I want to be financially independent again. Take trips, and travel through my bucket list. Find a life partner and share my happiness with them.
If I can’t have that, then going through all this pain and awfulness isn’t worth it. I want to know that there is a light at the end of this tunnel.
I want to LIVE, not just survive.
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