"stories have to be told

or they die, and when they die, we can't remember who we are or why we're here.” ~Sue Monk Kidd, The Secret Life of Bees A collection of gathered illness narratives, submitted by users both known and anonymous; an outlet to share stories and experiences

[illnessnarratives]

When I was in the fifth grade, I was walking to the cafeteria with the rest of my classmates. I was happily chattering to one of my friends, uncharacteristically unaware of my surroundings. One minute I was fine, and the next I was on the ground with tears in my eyes. I had walked smack into one of those old iron radiators at full speed and had slammed my right knee into it. My body went into response mode and numbed the area, so I was able to get up and make my way into the lunchroom without assistance and I thought that maybe I’d be okay. I convinced everybody that I was generally fine, and I figured all I’d walk away with was a really nasty bruise.

Unfortunately, the trauma to the area triggered an autoimmune response that I still live with (and will for the rest of my life). Ankylosing spondylitis (AS) is a genetic, chronic condition that occurs when one’s immune system attacks the cartilage in the body. It can onset randomly (generally in people who test positive for a specific genetic marker) or be triggered by trauma to a joint. The constant inflammation from the immune reaction causes the cartilage to harden into bone, often greatly reducing the range of motion, but also potentially fusing joints completely together. Since I have had the condition for so long, it had taken up residency in 90% of my joints. Fortunately it hasn’t completely fused anything together yet, but I only have a 5% range of motion in that knee that I smashed on the radiator, and am slowly losing motion in other joints as well.

The progression of my AS had plateaued for several years, which made me hope that maybe it wasn’t going to get any worse, but suddenly it began to burn through me again two years ago. Now I spend most of my day in a wheelchair and use a walker for moving around the apartment. Since our place really wasn’t built for someone who has physical limitations, it has made contributing to the household really difficult. To me, this has been the hardest part of living with AS.

When I first met my fiancé, I was able to walk unassisted, cook, do chores, and go out with little difficulty – all the things that a healthy person can do, even though I did need to take a break from time to time. Lately, though, he has had to pick up all the tasks that I have been forced to slowly drop from my routine. He now does all the cooking, 90% of the cleaning, all the household shopping, and chores like laundry and dishes.

I feel like nothing but a burden at this point. This was certainly nothing that either of us signed up for in the beginning. He’s been more than amazing about the whole thing, but I can’t help but feel guilty about how much he has had put on his shoulders by the situation. He has depression and anxiety now, and I quietly worry if it’s because of everything he’s had to take on because of my AS. He’d kill me if he knew I felt this way, but I can’t help it. Many times I just want to set him free so he can find someone else who can contribute and do fun things and eventually give him kids and generally be a lot more fulfilling for him. Someone who can wash her own hair and someone who can cook a meal and someone who can go for a spontaneous road trip. Someone who isn’t trapped in the body of a 90-year-old.

If you couldn’t tell from the previous paragraph, AS can also take a toll mentally and emotionally – many AS patients deal with depression and suicidal thoughts because the levels of pain can be so high. Since AS is often an invisible disease (no visible effects), many patients also deal with families and friends who don’t really understand the amount of pain that they are in. I’ve read so many stories of wives and husbands and parents telling their loved ones with AS to “get over it” or “stop faking” or any number of other hurtful things. Imagine being in crippling pain and not having anybody believe you — the pain from that alone would be enough to drive someone over the edge. Fortunately, I have a supportive and (mostly) understanding family. They may not really get how severe my AS is, but they do realize that it is unbelievably painful.

However, they do not (and never will) know that I harbor a passive death wish because of the sheer amount of pain I have. There are days where all I can think of is how much easier it would be to not have to deal with the difficulty of living in my body. I’m not the type that could ever take my own life, but there are times where I wish something would happen to do the job for me. A fire. A car accident. A tornado. Electrocution. It wouldn’t matter, just as long as the end result was the same. When it hurts to breathe because your ribs are fusing to your sternum and it keeps getting harder and harder to eat because your jaw is slowly fusing closed, death sounds like bliss. It sounds like a lovely nothingness free of all sensation, good or bad. Sometimes I wouldn’t care if I never laughed again if it meant I’d not have to feel my wrist hurt as much as it does right now. Sometimes I wouldn’t care if I never saw the sun again if it meant I’d not piss myself because I was too sore and therefore moved too slowly to make it to the bathroom on time. Sometimes the influence of the pain outweighs the pleasure of everything else. Then again, there are days where everything is fine regardless of the pain. Fortunately I’m still at a point where the good days far outnumber the bad ones, but I sometimes worry that that won’t always be the case. 

(Any questions about living with AS? Shoot me an ask.)

[illnessnarratives]

My illness has a funnier name than yours

I’ve always felt surrounded by illness. Not in a morbid or scary way, but in the sense that “hey, illnesses happen to everyone.”

And I’m grateful for that, because were it not for having this understanding of people living successful lives with different illnesses as a child, being diagnosed with so many different things would have been earth shattering rather than merely life altering. Altering, I can handle.

My very first official diagnosis was right before my 11th birthday in October.

And that diagnosis is the most hilarious and gross sounding diagnosis there is. Brace yourself. IRRITABLE BOWEL SYNDROME. The funniest sounding syndrome around. It’s okay, you can laugh because I do too. BECAUSE POTTY HUMOR IS FUNNY. Although 10 years later, I still skirt around the name because I can’t quite reconcile the hilarity of the name with the pain of the situation.

ANYWAYS. 

I spent the entire summer after fourth grade house-ridden.

It was cramping, crying, sweating, pleading with a higher power, holding onto my mom for dear life, more cramping, more crying, screaming, shivering, dealing with those irritated bowels, some puking… it was not pretty and not something I’d wish on my worst enemy. (Well. Maybe one.)

That summer I shied away food that triggered these flare ups. Except as the summer went on, everything triggered flare ups. I started the summer overweight. By the first day of school, I was 20 pounds lighter, scared to death to eat.

IBS is one of those diagnoses you get after they rule everything out. So they ran a million tests on me. They spun me on tables and made me drink weird things. They gave me ultrasounds and blood work—SO. MUCH. BLOOD WORK. The tests more often than not caused more flare ups. And the stress about results caused even more.

The thing was, my mom knew it was IBS the first time I had a flare up. She had it, and she just knew. She dragged me to the best pediatric gastroenterologist in the region and said “here’s a little girl with IBS, you can skip the rest” and it took them four months of testing to confirm what she knew from day one.

But she was a warrior. She was by my side through every flare up (which was almost every day) pouring Gatorade into my mouth to replenish lost electrolytes, wiping sweat off my forehead and tears off my face. She held me while my body shook and did her very best to make me laugh through the pain. She spent hours on the phone with doctors and nurses, sleeping in the spare bed in my room just in case I needed her. I don’t know if I believe in a God, but I believe in my mom.

With time, it got less severe. We found the right medication. There were less triggers. But for about two years of my life, I was grossly underweight and terrified to eat.

IBS is tricky for so many reasons but especially because it’s an invisible illness. And over the last 10 years, I’ve racked up a few more diagnoses, some psychiatric, some physical, all invisible. And they all interact with each other. 

When you look at me, you can’t tell that I’m sick. I could be in the middle of a flare up of whatever illness and you might never know. (Although if I’m sweating profusely, you can bet there’s something wrong.) At any given point in time, I’m probably in one type of pain or another, emotional or physical. Over the last 10 years, I’ve trained myself to just blend in.

And so sometimes, I get sick of hiding it and I just shout “I HAVE ISSUES” to people I barely know. I never really name or specify the illness, people never really ask, but I just need them to know that I’m in pain. If my arm were broken, a cast would validate my pain to strangers. 

It’s when I dealt with schools that I wished so badly it was visible, to prove to disbelievers that it’s real. My high school administrators exhausted so much energy to avoid giving me a Section 504 that I think my parents were within their rights to sue. The administrators would say, “look at her! She looks fine!”

Because invisible illnesses are invisible.

On one hand, it’s nice that my medical history isn’t on display all the time. I choose the time and place to disclose my illnesses. But then the discussions of “these are my illnesses” and “these are my circumstances” take a little bit more explaining for some people.

“Sorry I’m canceling again but it feels like my intestines have been constricted by a snake and I can’t really breathe or think or move right now.” “I know I look fine but I have a tension headache and every time I stand up I feel all the blood rush to the bottom half of my body and I’m almost certain I’ll pass out.” “I can’t hang out tonight, the presence of another human being will send my stress levels through the roof and I’ll either start crying or just hide under a blanket.”

Then again, the people who deserve explanations are often the ones who don’t need them.

In the mean time, I keep seeing my doctors. I have a million and six specialists and an incredible therapist. I take medication, I exercise even though it hurts more than it helps, I try desperately to keep a routine, and I work to build a life even when my insides scream otherwise.

A few illnesses I’m going to grow out of in a few years and others will be lifelong. Some days I’m angry about it, other days I’m at peace with it.  And on some lucky days, I’m able to laugh. Because Irritable Bowel Syndrome IS THE FUNNIEST NAME EVER. 

[illnessnarratives]

My Dad

This story isn’t about me, it’s about my dad. My dad has Bipolar type II disorder. We didn’t know for quite some time, until I was in high school i believe. Once we knew though it explained everything. It explained why months at a time he would just sit in the dark living room by himself. It explained why he would sleep for more than half the day. It explained why he hardly talked to us. It explained why he would only sleep for four hours every night. It explained why he would go on these sprees of random obsessions and want to give 1,000% on small things at months at a time. It explained why my dad was losing a connection a with me. It was frustrating that once he was diagnosed that he didn’t want to seek any treatment. It took forever to get him just to go to therapy. It took him multiple tries of being on meds but he would never stay on them long enough to work.

What was so frustrating is that it seemed like he didn’t even want to try. He seemed like he didn’t even care enough about us to want to try the meds, or to try to stabilize his depression and manic cycles. Meanwhile, while he attempts to try non-medicinal methods (that did not work) I was losing my dad and I was worrying about what if I inherit this. What if I turn out to be Bipolar II as well? So, I trying to more open to seeking help, went to a therapist, who reassured me that I was not bipolar.

Fast-forward four years-I am in college and my dad is finally going to regular therapy. He says he will start taking the meds again, but this time will stay on them. I am skeptical, but fortunately, I was wrong and he did indeed stay on the meds. He is still on some meds, his cycles have not been a severe, and sometimes it’s like he doesn’t even have Bipolar II.

I, unfortunately, did develop generalized anxiety, which resulted in sleeplessness. I battled with sleeplessness here at college for an entire year. I tried Benadryl, melatonin, staying up all night to make myself tired enough to sleep, and none of them could overpower the anxiety keeping me up. I have friends, I like my classes, I get good grades, I am even in a relationship, but this anxiety would just not go away. Then, my doctor recommended a short-term use of sleeping pills. Those pills worked like a charm, and knocked me out every time, but I couldn’t take them forever.

So, after a year of suffering from anxiety attacks at 2a.m. and nights with less than 3 hours of sleep, and starting to take sleeping pills every night to sleep, I went to my doctor and asked about anxiety medication. I was not scared, ashamed, sad, or even nervous about going on anxiety medication. I was actually excited. It was a relief to see my doctor write the script. Now maybe I could finally start enjoying my everyday life again. I could start enjoying sleeping in on weekend mornings. I could start enjoying feeling those cold spots in the sheets with my feet on my bed. I learned from watching my dad all of those years that in order to reclaim your life, you cannot be scared or narrow-minded when it comes to treatment for mental illness, because not only will treatment help you, but it will also help your family and friends. You will get to be yourself again and you will get to be a friend, a daughter, a father etc. again. I am not ashamed that I have to medicine for anxiety, because it’s not that big of a deal; it’s just who I am and how my brain decided to start working. It’s just a chemical imbalance and that’s something that is not under my direct control. I am proud of my dad, and I am proud of myself and I am excited to enjoy life. 

[illnessnarratives]

Submit Your Illness Stories!

The original purpose of this blog is for a sociology project in my illness narratives class.  It is a way to examine people’s experiences within medical fields and within society.  Most importantly, it is a place where people can safely talk or write about their own stories.  Often times, the simple act of sharing a personal experience, or seeing someone else share theirs, can have a huge impact on a person, or make someone feel less alone.  In opening this blog, my hopes are that it gives an outlet to help such people who may not be able to share their stories elsewhere.

The definition of illness narratives is a broad one, and for the purposes of this blog, I will simplify it to mean illnesses, injuries, or experiences that have affected the body or mind.  Submissions types allowed are highly unlimited, as each experience is highly personal, and should not be limited to any specific medium.

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[illnessnarratives]

When I was 13, my mother was diagnosed with breast cancer.

My parents had just come to pick me up from camp, and I was in the car, on my way into sleep, when my mother spoke up.

"I’m sick," she said, "I have cancer."

It wasn’t an earth-shattering moment for me, like it is for some people. It just didn’t seem real. And that was all my mother said about it, the rest of the four hour trip home. It wasn’t until a few weeks later, when my mother went into surgery to have her tumor removed and I visited her in the hospital, that it even sunk in at all.

My mother had cancer.

I started middle school. My mother started chemotherapy. Sometimes I would come home to an empty house, and turn on all the lights. Sometimes I would come home and my mother would be there, napping upstairs, my father working quietly from his laptop at home.

She was very careful to hide it from me, I think. There were some things that couldn’t be hidden, of course—my mother lost all her hair, and she was slower, sleepier, tireder. But if she complained, if there were any ugly moments—and there must have been—I was never there for them, not because I didn’t want to be, but because she never showed the pain in front of me. There was a sort of independent strength to my mother that I hadn’t seen until then—a determination not to burden me, my father—even my grandmother, her own mother, who to this day my mother never told about her cancer.

She said something to me, once, a couple of weeks into the chemo, that has stuck with me ever since.

"I’m going to get better," she said, "I’m going to watch you grow up and I’m going to watch you walk down the aisle and get married. I’m going to get better. It’s going to be alright. I’m not going to die."

I cried, then, like I hadn’t when she had first told me or when I had seen her in the hospital or when she began to lose her hair. I cried because I was relieved, because I was afraid, because I didn’t know how to make sense of any of this or how to help my mother. I cried because I didn’t want to admit that I had been afraid of exactly that outcome—losing her—and she had known anyways.

[illnessnarratives]

Time heals all wounds but erases memories

I believe its true that the pain of losing someone you love becomes less acute with time.  Its nature’s way of allowing you to adopt a new normal of living and move forward.  However, with that comes the dulling of memories and sometimes that’s a tough trade-off.   Years forward, you can no longer remember dates, events & conversations as clearly as you once did.  You feel your loved one slipping further out of your grasp.  And that’s hard to accept.

[illnessnarratives]

Submit Your Illness Stories!

The original purpose of this blog is for a sociology project in my illness narratives class.  It is a way to examine people’s experiences within medical fields and within society.  Most importantly, it is a place where people can safely talk or write about their own stories.  Often times, the simple act of sharing a personal experience, or seeing someone else share theirs, can have a huge impact on a person, or make someone feel less alone.  In opening this blog, my hopes are that it gives an outlet to help such people who may not be able to share their stories elsewhere.

The definition of illness narratives is a broad one, and for the purposes of this blog, I will simplify it to mean illnesses, injuries, or experiences that have affected the body or mind.  Submissions types allowed are highly unlimited, as each experience is highly personal, and should not be limited to any specific medium.

MAIN || ASK || SUBMIT || ABOUT || FAQ

[illnessnarratives]

Here is a Small Fact

I’m not quite sure when it started (nor am I entirely sure exactly what ‘it’ is, but that’s another topic).  I know that my first experience with death was sometime in sixth grade, when my best friend lost her grandfather, whom I had never met.  I went to the funeral anyway, to support my friend, but I’m not sure I truly grasped the enormity of it.  It was that very same year that my own grandfather died, but then again, though I was sad, and I cried, I don’t believe I really understood the finality of it.  In truth I think it took two funerals, the close friend of my mother, whom I knew quite well, and my other grandfather, both of who succumbed to different forms of cancer.  Perhaps it was because I was older, or perhaps it was because I knew them both well, but their deaths affected me much more deeply, and I believe it was then that I started to truly understand that I was going to die.  Ever since, this fact has bothered me deeply, slowly working the resulting insecurities and fears- Will I find love in time?  Will I make a difference before I am gone?  Will I have a family?  Will I be happy? - into my consciousness.

            Of course, I didn’t really notice, at first.  Sure, I would occasionally, as a child, ponder my fate, and go in tears to discuss it with my mom.  She would generally assume that it was a fear of losing loved ones that gripped me, given my empathetic nature.  And of course, that too is something that I fear, but my worst fears have always been a little more selfish.  She would comfort me of course, and usually, for the time being, I would feel better.  Now I am older, it is difficult to discuss with either of my parents, for I am sure they both have the same fears- my mother trying, I assume (perhaps incorrectly), deals with them through religion, and I suspect my father, an atheist like me or perhaps agnostic, simply avoids thinking about the subject, also like me.  When I do think about it, I tend to break out into a panic, something I first noticed in my first semester of freshman year, when I heard that a girl- who I knew only by name- from my hometown had committed suicide.  Though I barely knew the girl, I had my first full-blown panic attack in the bathroom that night, trying to keep quiet lest I wake my roommates.  I called my mother the next day, and that helped, though my coping mechanism is still generally to avoid thinking about death.

            Despite how much I was clearly affected by my fears and anxieties, I did not truly realize how much these issues would be reflected in my every day life.  I did not really understand the extent of my troubles until spring of 2013.  In spring of 2011, I was set to graduate high school as an A/B honor student with an advanced diploma, and numerous academic accomplishments, but a mere two years later, I was being forced to take a semester off from college, with more Fs to my name than any other grade.  Rather hard to handle, considering I had never gotten below a C, and rarely that, before college.

            In 2nd grade, I took a special test, and got the second highest score in my class, far higher than the next top score.  As a result, I was officially declared gifted and talented, and shipped off to a new school that had a program especially for ‘smart’ students.  Once the third grade began, I was considered smart, therefore expected to be capable of doing well in all academic subjects, and placed under immense pressure from society, my educators, my parents, and especially myself, to achieve high scores in all classes.  An easy feat, when the hardest math problem you may encounter is 2X=6 (X=3).  Unfortunately, once I reached high school level classes, I realized that actual studying was needed in order to perform well.  So of course, I did study.  I was smart, after all, and all set to take full advanced course loads, graduate as a member of the national honor society, and get accepted into a slew of Ivy League schools.

            Strangely, or perhaps not so much, the possibility of anything less, such as community college, never once crossed my mind.  I was smart.  So I did what was expected of me.  I passed all of my classes, and was accepted into a good university.  It is perhaps worth mentioning that despite my relatively good grades in high school, I did suffer the infamous ‘senioritis,’ but I made it through fairly unscathed, certain that my lack of motivation for schoolwork was temporary, and would not be a problem in college.  Not true, as it turned out.  It only got worse in college, with an unknowable but large number of factors at play.  My age didn’t help.  I was an adult now, and yet I had accomplished nothing of note.  Then there was the thing that constantly bothered me- I was taking classes here, costing my family thousands of dollars, and would I really learn anything truly required in my future job?  Was I really going to college for any reason other than that society said I had to go to college?  Another most pressing issue was the entirely reasonable fear that I would do my work, pay the tuition, and graduate with no job openings, ending up stuck in a low wage job that I did not care about.  I would have gone through four years of hard work for nothing.

            These factors alone were enough to make things difficult for me.  These factors combined with my fears and my anxieties caused me to sink into a crippling sadness, becoming highly overwhelmed, and somewhat depressed.  What was the point of going to class?  I probably wasn’t going to get the job I wanted anyway, and besides, in the end, would any of it matter at all?  In the end, I was just going to end up in a hole in the ground.  Why go outside where it’s cold, walk all the way to class, and sit for an hour or more doing something I don’t particularly enjoy, if I can just stay in my apartment, reading, or watching movies, distracting myself from my fears where it was warm and comfortable.  Of course, not going to classes produces poor results. For the longest time, I thought maybe I was just lazy, or lacking willpower. 

            Thankfully, after I broke the news of my suspension to my parents- having withheld the information in terrible anticipation of their disappointment, my mom asked if I would see a therapist.  I agreed.  I didn’t know if it would help any, but it was worth a try.  Maybe the therapist could help me, or even if she couldn’t, at least I could do something for my parents, who’s disappointment was palpable, but who still supported me despite not understanding, and despite the money I believed I had wasted.

            The therapist didn’t cure me, much to my disappointment.  And indeed, even if I had something diagnosable, which I thankfully do not, such things are hardly curable.  Rather they are treatable.  She certainly helped.  She helped my understand everything I have relayed here, and helped me realize that my mistakes were not a result of laziness, but other fears and anxieties that had been affecting me.  I still have these fears and anxieties of course, and there are certainly days or weeks where I feel sad, and don’t feel like doing much of anything, or where I am unable to stop myself from remembering my inevitable death for just a moment, and have a minor breakdown before I can distract myself.  Yet, with my therapist’s help, by thinking things through, and considering different ways on how to deal with them, I have been able to return to school, already bringing my grades up, and working hard to get through something I simply do not enjoy much in the knowledge that I can gain meaning and enjoyment out of other parts of my life.  I have been able to persevere in the knowledge that if I can make it through, with the support of my friends and family, I will be able to move on with my life, and do something that I can be content, and maybe even be happy with.

[illnessnarratives]

Submit Your Illness Stories!

The original purpose of this blog is for a sociology project in my illness narratives class.  It is a way to examine people’s experiences within medical fields and within society.  Most importantly, it is a place where people can safely talk or write about their own stories.  Often times, the simple act of sharing a personal experience, or seeing someone else share theirs, can have a huge impact on a person, or make someone feel less alone.  In opening this blog, my hopes are that it gives an outlet to help such people who may not be able to share their stories elsewhere.

The definition of illness narratives is a broad one, and for the purposes of this blog, I will simplify it to mean illnesses, injuries, or experiences that have affected the body or mind.  Submissions types allowed are highly unlimited, as each experience is highly personal, and should not be limited to any specific medium.

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