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Learning to Live with Chronic Illness: A personal account of exhaustion, frustration, and infinite visits to the bathroom

May 7, 2018

Two days before my 21st birthday I was sitting in a hospital bed waiting for the doctor to take me into surgery. For years I had been sick, had numerous tests run, and left every doctors appointment with more questions than I had walked in with. I was living in constant pain, unable to eat, and when I did, I would be met with massive bouts of nausea, vomiting, and diarrhea. Diarrhea, a once taboo and all humiliating word, which would eventually become one of the most frequented words in my vocabulary. Doctors didn’t know how to diagnose me, but because I had a family history of failed gall bladders, we decided that the chances were good that mine needed to go. When I was told about the surgery, the doctor said: “Now, this can make things better, or it could keep things the same, so I am leaving the decision up to you.” When you have been chronically ill for a long time and are desperate for improvement is there any decision that needs to be made? “I am having the fucking surgery” is what I wish I had said, but instead my reply was something like, “I think I would like to try it if you think that it could help.” This was at a point where I felt distrust for doctors when I should have felt comfort. By this point in my life, I had encountered some good doctors and some awful ones. About a year before this surgery I was rushed to the hospital with 104 fever and immense stomach and back pain only to be met with a male doctor who was kind enough to point out that “women often exaggerate their pain.” He was lucky that my “exaggerated woman pain” had me stuck in bed because a healthy me would have taken that exaggerated pain and shoved it where the sun don’t shine. We are raised to believe that doctors are there to help us, but what I have learned is that some can’t see past gender. I wish I could say that my experience with that doctor didn’t phase me, but for a long time after I second guessed every ounce of excruciating pain I felt because I was worried it wasn’t real. Unfortunately, a large part of being sick is encountering the good and bad sides of medicine; he was one of the awful sides.  

So I elected to have my gallbladder removed out desperation. Desperation, a feeling that some times is all consuming on the days where I can barely lift my head from pillow, or on the days I spend all day in sitting on the toilet. Desperation is an emotion that has consequences. As it turned out, my desperate decision to have my gallbladder removed was not the cure I was looking for. In fact, the constant bile running through me was, and remains to be, a curse that I brought upon myself. Understand this, though, I was waking up every day feeling so miserable that I was willing to have a surgery that would prevent me from celebrating turning 21 over spring break with my friends. I just wanted to be “healthy” but I would eventually find out that my journey with illness was just beginning.

I am an athlete by nature. I grew up with red dirt from the softball field permanently stained on my skin. I love being outdoors hiking, running, swimming, anything to just being active, and if given the opportunity, competitive. I started getting sick in high school, then it escalated in college, and then by my 23rd birthday I felt like I was barely there. I wasn’t able to workout or be active anymore, just walking around at work felt like a feat. I began losing a part of myself that I didn’t know how to live without.

When I graduated college, I moved back home to Birmingham, Alabama. I moved in with my dad planning for it to be a short-term arrangement. That was until I had saved enough from my job to get my own place, but what they don’t teach in economics is that medical bills will steal every dime you make, and I was going to find out that medical bills would soon be ruling my life.


I hit a physical breaking point not long after college where each day was spent going to the bathroom over 20 times, blood was regularly present in my stool, I was waking up drenched in sweat every night, and I was getting to the point where I was terrified of eating.

 

I still hated going to any doctor because every time I felt so let down by the system that was there to help me because nobody could ever find a diagnosis or treatment that alleviated my symptoms. Hearing the words “the test was inconclusive” one more time would have broken me. Being diagnosed is such a difficult process, but what was more difficult was the constant feeling that my symptoms were all in my head. It also didn’t help that I was constantly spending money I didn’t have on doctors that didn’t help.

 

Eventually I gave in and went to see a new gastroenterologist that was recommended to me by a friend. The doctor was a woman, which I had not encountered yet in the gastro field which gave me high hopes. I still see her to this day and I am so thankful for her. She was kind enough to give me my first colposcopy. After spending over 6 years going in and out of doctor’s offices someone was finally going to give me the test that would ultimately lead to my diagnosis. For those of you that haven’t had the pleasure of having a colonoscopy, I have three words for you “shittiest experience ever” and the pun is intended.

While the experience of my first colonoscopy is difficult to forget the diagnosis that came from it lives with me every day. I have Crohn’s disease, an often painful and debilitating autoimmune disease that has no cure. I was relived to finally not feel crazy and like my illness was all in my head, but I was also scared because there was no cure, there was no chance of ever being the healthy person I once was. My doctor explained the illness to me in detail and without the ridiculous medical jargon that confuses patients more than it assists them. 

 

She was honest and told me that with my case there is no remission where I won’t be sick, but there is a remission where I will not be as sick as I was at that time. She was vigilant, and we immediately began working on a plan to get me into remission.

The one thing that I learned from the many failed years of misdiagnoses and sexist doctors, which I can not stress enough to anyone that is sick, is that you can’t wait for someone to advocate for you, you have to advocate for yourself. When I got sick I allowed my thinking to be led by the innocent belief that doctors would take care of me, but experience taught me otherwise. When I began to advocate for myself I would come to my doctor’s appointments with a list of symptoms I was having and a list of questions I needed answered. If I was going to get better, I was going to have to actively participate in the process and not rely on the medical world to do it for me.

 

My doctor and I began my treatment with numerous different medications, all in horse size pill form, that we hoped were going to help. At one point I was taking so many pills each day that I had to get a pill organizer that organized by the hour. Unfortunately, over time I just began to decline again, and with symptoms of immense join pain beginning to emerge we knew we had to try something different. Which led to my next great find in the medical field, my rheumatologist, another female doctor. She looked at my joints and was not pleased. She gave me injections in my shoulders with a needle that still seems like it is the size of a pencil every time I get them. The numbing doesn’t help and they hurt like hell. It also did not help that I had Raynaud’s disease and my circulation was getting so bad I had gangrene on my big toes. It looked, and felt like, my entire body was falling to pieces. I learned from both of my doctors that it is common for rheumatoid arthritis to present itself with cases of Crohn’s like mine and it seemed that it was trying to. So, my rheumatologist and gastroenterologist decided it was time for a more intensive treatment. I had lost close to thirty pounds in two months. People kept saying to me “man I need Crohn’s so I can lose some weight.” There where also rumors that I had an eating disorder which began pushing me further towards the depression and anxiety that would eventually takes it toll on me as well. I did decide that if I had o hear any of that one more time I was going to have to use the last tiny bit of energy I had to open up a can whoop ass. I was once again desperate and all for whatever it took to get better.

 

What you don’t read in most health articles is that being sick is expensive. I have great insurance, but it is insurance that I pay close to $500 a month for out of pocket with a job at the time where I barely made enough monthly to cover that.  I was still living at home with my dad, because I was swimming in constant medical bills because the horse pills are expensive, the steroids are expensive, the weekly doctor visits to specialists are expensive, and now I was in need of a costly treatment that I would need to receive regularly. My dad was helping with the bills, but being the stubborn person that I am, I kept my debt and a lot of the bills to myself because I didn’t want to feel like a charity case. I was living in constant anxiety over how I was going to afford things like gas, and I was living with that anxiety alone.  Was I planning to move out of my house any time soon? Nope, because my money was the medical fields money.

 

My doctors decided that Remicade, a biologic used to treat Crohn’s disease and Rheumatoid Arthritis, would be our course of action. Don’t read the information on these drugs because it will scare the hell out of you. Biologics suppress your immune system, meaning that germs were now my worst enemy. Luckily I was in graduate school studying to get my Masters in Secondary Education; teachers never encounter germs and illness, right? I had a lot of mixed feelings, but the most overwhelming was the need to get my life back.

Something else they don’t tell you when you get sick is the toll it takes on your relationships. My boyfriend of four years at the time was spending our relationship taking care of me, missing me because I couldn’t get out of bed, watching me wither away. My dad was constantly in worry mode checking on me, taking me to the doctor, watching me suffer without being able to help me which I have been told is “a parent’s worst nightmare.” I was carrying so much guilt because I wanted to be the happy, laid back, fun person that they knew I could be, but I just wasn’t physically or mentally capable of it. The debt, the illness, and the unknown had led me into a depression that I wasn’t strong enough to break free of at the time. I did know that I wasn’t just trying to get better for me; I was trying to get better for them.

 

I began the Remicade infusions, which meant I was a regular at the hospital because you receive these infusions through an IV over a period of a few hours in a room full of other people doing the exact same thing. The infusions took time to make a difference, they exhausted me, but it eventually began to work. They didn’t work alone though. My B12 was non-existent, so the weekly injections of B12, the steroids that make me puffy and irritated, and even the disgusting chocolate ensure I forced down each day assisted in my slow recovery. I was spending hours in the hospital getting these infusions, but it was ok because for the first time I was in a room with other people that were going through the same thing as me. I realized that this was the part of my fight that I didn’t know I needed.  Yes, I am usually the youngest person in the room, but for the first time in a long time I didn’t feel alone, and that in itself has been a vital part of my treatment. The infusions eventually worked their magic, and I had a blissful year of remission.

 Unfortunately, remission is not a lasting cure, and recently I did fall back out of remission. About seven months ago I started having such severe pain in my right arm that I was unable to use it. It began to swell, was hot to touch, and miserable to feel. I knew in my heart that this is what my doctors had warned me would eventually present itself, Rheumatoid Arthritis. in December after a long visit with my Rheumatologist she confirmed that it was time to add a new file to my ever growing medical history. She said that because I have Crohn’s we were going to refer to it as Crohn’s Arthritis, but it has the same exact effect Rheumatoid Arthritis does. This autoimmune disease seeks and destroys your body’s tissue. What most people don’t know is that the images of people with this disease are burned into my brain, the gnarled joints, and the fact that many people are unable to comfortably move and eventually can’t draw or write was something I was very aware of. I studied art in college, drawing and writing are favorite pass times of mine, and when I heard this news I felt like I was once again about to lose a part of myself I didn’t know how to live without. I drove around after the appointment crying and feeling sorry for myself. I allowed myself to be sad and to be angry and because I have learned that sometimes that is the best medicine. I known I was sick again this appointment just forced me to accept it. I had begun to rapidly lose weight again at this point, I was throwing up, sprinting to the bathroom 20 or more times a day, and was once again losing the ability to be physically active. It was once again time to begin a more rigorous treatment, but if you have seen pictures of what Rheumatoid Arthritis does to you, like me, you wouldn’t hesitate to do whatever it takes and once again I was feeling desperate.

 

In December they began increasing my Remicade dosage and increasing the frequency of infusions, and I began weekly Methotrexate injections in the stomach administered by me to me. Methotrexate is a form of chemo, so I spend a lot of time lately still trying to adjust to the nausea, the vomiting, and the hair loss. What they don’t tell you when you get sick is that sometimes to get better you have to do things that can make you feel worse.

 

I only told a select few people about how I was feeling and the treatment I was beginning. Christmas is my favorite time of year and I wasn’t prepared to listen to the lectures, questions, and frequently verbalized concerns that I knew I would encounter. My family is my world, but sometimes I feel like I have allowed my illness to be all that I am and all that they see. I think about this a lot, it is the reason I kept my invisible illness from so many people, I constantly worried that by sharing my story people thought I was trying to get attention. I would eventually realize that by sharing my story I was opening myself up to a form of therapy I never knew I needed.

 

It has been a few months now, and I am slowly starting to feel progress. It is still hard to sleep some nights from the aching in my joints, but it isn’t hard every night. I can write and draw, but I have to take breaks or the aching becomes too much. Some days I don’t have to excuse myself to the bathroom in front of my students every twenty minutes, and some days I feel healthy enough to go to the gym. There will never be days where I will be the athlete I once was, or even the person I was once was, and that is something they never tell you when you get sick.

 

According to the American Autoimmune Disease Association, there are “50 million Americans in America right now with autoimmune diseases.” According to the article “Women and Autoimmune Diseases” by DeLisa Fairweather and Noel R. Rose, of those 50 million 78% are women with autoimmune diseases. So why is it that in media today we don’t see many stories about the women that are dealing with these diseases? This is the question I have frequently asked myself over the years. I have looked online to try and find articles that I could relate to and empathize with, but instead, I have been met with articles that make me feel less than and ashamed. The representation of women in media with these illnesses is a minority grouping.

 

When in search of stories like mine I have been met with stories of women who run marathons in between treatments, or women that are training for their next triathlon. While these are incredible feats and I salute these women, and I am so proud of them, their stories for a long time made me feel like I was doing something wrong. Not only am I no-longer kickboxing or running, but it also takes everything in me to make it through a low impact workout class now, and that is after taking breaks and drinking my weight in water throughout. So I asked myself constantly when seeing articles likes this “what am I doing so wrong that I can’t be like these women?” The answer I have finally discovered is NOTHING.

 

There are millions of women in this country, and on this planet, that are sick and in need of stories that let them know they are not alone. I don’t know if I am the person they are looking for or if my story is one that they can relate to. I do know that I am in the majority when I say that I feel like a warrior each day that I wake up, get out of my bed, and go to work.

 For the past two years, I have worked as a full-time teacher by day, while going to class at night to get my Masters in Education, all while dealing with the ups and downs of being chronically ill. And let me tell you there are a lot of downs. As a chronically ill teacher, you feel the constant pressure of needing to act like you are feeling good because you want to be there for your students. There are days where I cry during my break because I feel like I am failing them by not being healthy. Irrational? Probably, but it happens. You don’t choose your calling based on your health, because if I had, I would more than likely be a plumber. You select your calling based on where your heart leads you and mine led me to want to make a difference in kids lives. What they don’t tell you when you get sick is that you have to fight for your career. Right now I spend my days teaching, sprinting to the bathroom to throw up or as the kids like to say “go number two”, or both, and then run back down the stairs and outside to my classroom trailer that is about a five-minute walk from the nearest bathroom. I do this not because of how clearly glamourous it is, but because I want to be there to teach my students. I want to show them that we are all capable of more than we could ever imagine, and trust me when I say this because when you have to “go” and have to run up multiple flights of stairs to be able to do so, you are capable of just about anything in my experience. To the women out there with jobs that are in no way conducive to your illness you are not alone.

 

In just a matter of days, I will have graduated with my Masters in Secondary Education. This feat is my triathlon, because I worked my ass off day and night, through vomiting and diarrhea, through tears and doubt, and now it is here. I am the second person in my family to get a Master’s degree the first and only other was my grandfather. What they don’t tell you when you get sick is that school doesn’t slow down just because you do. There were many times were I was cursing the world for making me believe I could somehow work full time, get my Masters, and manage my illness. Did I end up taking a semester longer than planned? I sure did, but I am ok with that because every ounce of spare energy I have had in the past two years I have given to make it to this day. It was not easy, and yes I wanted to give up, but to all of my fellow students out there trying to make it through while sick you are not alone, and I promise you that you can do it. Will you have to divulge personal information to your advisors and professors like “hey I haven’t been able to step away from my toilet all day, so I can’t come to class” maybe? But being open about your illness, the embarrassing parts in all, is the only way to get through it.

 

Three days ago I got married to the love of my life. My husband and I have been together for six years, and my illness did take a toll on our relationship. It caused fights, it caused frustration, and sometimes feelings of inadequacy. What they don’t tell you when you get sick is that it can be a bit of a romance killer. Do I feel beautiful and sexy when my joints feel like they are snapping and my bowels feel like they are being twisted into a pretzel, definitely not. Learning to communicate, to be intimate without “being intimate,” and being honest is what gets us through. It isn’t always easy and it is definitely frustrating at times but we are the happiest we have ever been.Our relationship has never been stronger or more beautiful and it continues to grow each day. For those of you struggling in your relationships or those that are scared of being in one because you don’t feel like you can be “enough” for someone, it is possible, and you are not alone.

 

I am lucky. I haven’t had to have all of the invasive surgeries that so many many have had. There are so many that are far worse off than me, so many stories of women who are absolute warriors for simply putting a smile on their faces. Those are the women we should be writing about, and talking about, not the Selena Gomez types who have endless resources; we need to be talking about the women who fight each day to live. We live each day with statistics telling us that we are far more likely to have cancer, we live each day with statics telling us we are far more likely to die before the ones we love, and we live each day knowing we will spend our lives fighting.

 

What they don’t tell you when you get sick is that while you can lose apart of yourself, you can also gain a much greater part, a much stronger part. I am not afraid of falling short, of not being good enough, or of not being the person I once was. Some days I cry, some days I scream into my pillow, and some days I am grateful. I don’t go running, and I don’t do body attack anymore, but I do dance my ass off every Wednesday night at the Y when I feel up to it. I am more open and honest, which has freed me, and which has also allowed me to no-longer be terrified of public bathrooms and the word “poop” which has made traveling much easier. I have learned to appreciate the small things, like being able to go for a walk on a sunny day. I have also learned to allow myself to have days where I hate the small things. I have also unearthed the remarkable talent of being able to fall asleep anywhere at any time.

 

At my wedding, people were giving speeches, and at one point someone referred to me as “fierce,” and I thought that was the best compliment I have ever been given. Each day I wake up, and I keep fighting alongside all of my other invisible illness warriors, some days with a smile and some days with a lot of anger, but I keep fighting, and that to me is fucking fierce.

 

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FIGHT LIKE A WARRIOR