I’ve always had trouble accepting the negative things in life, and having a heart condition means that you get a few of them. Having grown up “different,” the effect of multiple heart surgeries, seems so normal to me. I look down at my tummy and can’t imagine having a normal, unscarred stomach.
I think I’ve only been able to accept my differences to a certain extent, though. Sometimes, there are only so many limitations I can take. I cried and cried when my mum wouldn’t let me start horse riding. She was worried I was too delicate - that I would bruise - because of my warfarin. I was in year 3. I think that was also the year I wanted to get my ears pierced. This was another no. My cardiologist said it was possible, but I may get gigantic bruised ears for a few weeks and so I wouldn’t be able to swim. Summer was coming up; I had to be able to swim.
I thought of acceptance again when I was in Bali recently with my dad and my older brother. We were at this place where you could go snorkelling and participate in other kinds of water sports created to roll in the tourists. They had this one called the flying fish. There was this big inflatable “platform” type thing with individual indents for people to lie in, in a way where their feet would probably hang off the end if they were tall. The inflatable platform was attached by a pretty long rope to a speed boat that would race along the ocean until the platform rose up in the air so you could feel like you were flying. Supposedly.
My brother was maybe going to do it, and if he was doing it, so was I. Dad was concerned for my safety and quite dubious of the situation. He thought it looked dangerous and could be really bumpy going up and landing back on the water. This objection seemed ridiculous to me. If it was safe enough for one of his children, then why should I be any different? So what if I got a bruise or two? My brother wasn’t set on doing it anyway, so in the end none of us did. But, in the car on the way home, I couldn’t help but think about how I am and have always been so stubborn in refusing to accept differences in capabilities between my brother and me.
I’ve always been so insistent that the only things different about me are my scars on the outside and my metallic valve on the inside, and neither do or should hold me back.
This mindset has given me wonderful experiences. I played soccer throughout school, despite my mum being worried at first. I did SAPSASA cross country in year 5. I went on school camp not two months after heart surgery in year 10. I climbed that tree despite the fact I could fall.
What’s the point in life if we never take risks? We’d be stuck, incubated. I’m just not that kind of person.
I don’t sit around and pity myself, but I have to admit that it is not infrequent for me to bemoan certain circumstances in my life (as I suspect many do). I never stop comparing myself to everyone else around me, mostly to the person I always anticipated being and the life that I had planned for myself. Frankly, when I do that, I am rarely happy with what I see.
When I was 15, I almost literally had the world at my feet. I was a straight A student, had great friends and an amazing family, and I knew what my dreams were and could see clear ahead to accomplishing them. I started getting sick, but - like all kids who think they are invincible - I didn’t do anything about it. When I finally did seek help, I just assumed that I’d be 100% in no time, regardless of the findings.
Then I got the news that I had Crohn’s Disease, something I had never even heard of. Shortly after, diagnoses of two other autoimmune diseases piled on top of that. After a few months of illness, I realized that that word “chronic” that had been used at diagnosis was really going to be my truth. My debilitating Crohn’s disease consumed my life, and I felt like it was crushing me. After successfully coping with my depression and anxiety disorders for most of my life, the tremendous stress of these new illnesses put me over the edge. I spent a lot of time in psychiatric treatment programs and hospitals, all the while coping with my Crohn’s. Between the Crohn’s and the depression and anxiety I have had nine inpatient stays in three and a half years, totaling at least 8 months. I’ve had various types of feeding tubes, 40+ infusions and low dose chemotherapies, and other treatments.
Yet, my life is a good one. I still have great friends, an incredibly loving and supportive family, and support like you wouldn’t believe from my school community.
I have spent years thinking about the fact that I had to drop out of school, that my friends are moving on without me, that my brain doesn’t function how I want it to because of pain, fatigue and attention deficits, and how I have to do so much just to stay somewhat healthy - while it seems like those around me don’t have to deal with those things. But comparing my life to the lives of my friends and to the theoretical life I was “supposed” to have only serves to make me miserable. There are a lot of people who talk about never trading their disease for anything because of the person it made them into. I am not really one of those people.
I believe that we make meaning out of our struggles.
I have certainly found ways to find in myself tremendous strength and maturity as a result of my struggles, and I know that will serve me well. Most likely, I would have never discovered some of the best things about myself if I hadn’t gotten sick. I may never look at my current life and then at the life I had planned and like how things turned out. But I have finally realized that, if I want to be happy, I have to stop those comparisons. I want to make the life I do have the best it can possibly be.
When I was 3 years old, I chipped my tooth trying to climb down a tall set of stairs on my own. Asking for some help or saying, “I can’t,” has never been in my character. This worked out well for me for most of my life. I took on every challenge without fear and excelled in everything I participated in. I was always self-motivated and strong in the face of adversity.
Being diagnosed with Undifferentiated Connective Tissue Disease made me doubt all the strength and independence that had for so long shaped my identity.
When I was tired and could barely get out of bed, one of my biggest concerns was that people around me would think I was just lazy and unmotivated. When I was sick, I was more worried about having to ask someone to take care of me than actually getting better. I would cry just because I was tired of lying in bed with fever, infections, and aches. I felt so weak and out of control of my own body, and at the same time too prideful to ask for help. I knew how to be strong, but with my illness I had to learn to lean on others for the strength that I no longer had.
When I opened up to my friends and family about my symptoms and how they could help, UCTD became so much easier to handle.
They were all so eager to make my transition as easy as possible. My best friend would help me remember to take my meds on days that I was having brain fog. My step-mom always reminded me to slow down and rest when I was feeling weak. When I was having a bad day, my boyfriend was always there with a word of support and love. My dad was always checking on me at school to make sure I was still able to enjoy being a 19 year old in college, despite the new limitations I had.
Opening up to family and friends about being sick is not always easy though. No matter how hard you try to explain, sometimes it’s hard for someone not going through your challenges to understand you. I can still be tired even after a full night’s sleep and day of rest. I am eating, but I can’t make myself stop losing weight. I know I don’t look sick, but I really am. I have found that consistent repetition is essential to helping my loved ones understand what I go through. Although it can be annoying, I know that they love me and want to understand my illness so they can help me live a better life.
In the beginning, being sick felt like the end of my life. I felt helpless and not like myself at all because I was trying to handle everything on my own.
Reaching out for support has been the best coping mechanism for me.
And asking for help and admitting that I can’t do it on my own doesn’t make me any weaker or less independent. My strength is in letting go of pride for the sake of my health. My independence is in taking the initiative to set up a system of support for myself. Being sick hasn’t robbed me of my character, but has shown me new ways to express it.
Note from the author: Below is the speech I gave at the Alex Jones Memorial Golf Event. Each year, the Jones family holds a memorial golf classic in order to raise money for IBD research in the name of their son Alex. Alex committed suicide because of the stressors his Crohn’s placed on him. I thought that the speech I gave was fitting for the event and for this blog because of the pressure put on patients with chronic illnesses.
For the past few weeks I have been thinking about what I should talk about tonight - besides trying out some poor golf jokes - as I was sitting in church last Sunday listening to the sermon. The sermon was about heroes in the Bible, and the message for us to remember that even with all the things these biblical heroes did, they were still human.
The minister delivering the sermon at my church has inspired me in the past – he is also a chaplain at Cincinnati Children’s Hospital and I relate to most of the sermons and experiences he shares very well. On this particular Sunday, he said Jesus was only human, and it made me think about how patients are only human too –
I like to sometimes think of myself as a superhero, but the fact is, even though I like to try to put on a brave face about my disease, I have discovered I am human … and that is okay.
I am not sure where it comes from, but it seems there is an expectation that someone suffering from a chronic disease is expected to put on a strong or brave face. It’s that brave face that brings the “I’m fine” replies. It’s that brave face or mask that hides what we are truly feeling. Many times it is to protect other people around us because we do not want to worry them. Other times we put on the strong face to give off the impression we can do it; we do it for us.
But, we are only human. The fact is Crohn’s disease is hard … and working through it without any sign of weakness would be impossible! Many people who know me probably think of me as a tough guy. Black belt in Karate, Eagle Scout, Marching Band super hero … along with three surgeries, back fractures due to osteoporosis, and going through all the pediatric approved medications by the time I was 17. I am not saying I have been through more than others, just that my experience warrants people to title me as a tough guy.
Nevertheless, tough guys sometimes hide behind a mask, and every so often that mask disappears. Two Christmases ago, during my last surgery, which included a seven inch bowel resection, strictoplasty, and a reversal of an ileostomy, the façade disappeared for a time and the tough guy panicked. The drainage tube that is often placed after a major abdominal surgery to combat dormant intestines was in for a long time after that surgery. The drainage tube was a large foreign object, and the mucous my body secreted to try and fight that was making it difficult for me to breathe.
All the stress on my body from the surgery and the drainage tube left me weak, and I panicked thinking I would not be able to overcome this challenge. My mask fell … but I did overcome the challenge. My dad calmed me down, and my heart rate went back to normal. With his encouragement, I got through the rest of the recovery. In the end, I dealt with it. I overcame a rather large renovation of my intestines and managed the emotion of being in the hospital over Christmas;
I showed my weakness that night in the hospital, but in the end, that was just me being human.
Ultimately, we are all human. We hide behind a mask to protect the others around us from being hurt when we fall. The truth is, though, we are going to fall sometimes and need someone there to catch us when we do. Crohn’s disease leaves many people vulnerable – people that have to force that mask on their face every morning. I am heading to University of Cincinnati in September to study Biochemistry and then progress on to medical school; my new goal in life is to be there for those that are also vulnerable and that need someone to be there to pick them up when they fall.
Through my disease, I am more open to showing my vulnerable side – and by sharing this with others I hope someday that they will realize being human is okay and being there for others is okay too.
As a former camper, I have experienced the benefits of Camp Oochigeas first-hand. My first year attending was back in 2002 when I was 10, though I could have gone earlier. My first year went pretty well overall. I stayed for the two weeks, made friends (even now, I am planning a reunion with a few!), had a ton of fun, and lastly, I challenged myself and picked up some new skills. Needless to say, after that summer in 2002, I went back every summer up until 2008 when I wasn’t able to go due to a new cancer diagnosis. Acute Lymphoblastic Leukemia.
I returned in 2009 as soon as I could, but things were much harder now as I had acquired a lung condition called Bronchiolitis Obliterans after the marrow I had received in a bone marrow transplant started to reject in a very severe way. The nature of the condition made it hard enough to breathe that, during most of it, I was unable to walk more than a few feet without being totally out of breath, unable to take in more oxygen as the bronchioles closed up fully after I breathed in.
Since a lung transplant in 2011 and a long and still ongoing recovery, I decided to apply as a camp counselor at Camp Oochigeas, and admittedly, I had many hesitations at first. I have a very special person named Sarah to thank for helping me realize that I could do it. I only spent a week at this camp rather than the full two weeks as I was unsure how I would handle that length, but after the week ended and I had to leave, I couldn’t help but feel some regret deep in me at not trying for two weeks in the first place. I was a bit nervous beforehand about the whole transition to counselor, but it went really well, and was such an incredible and amazing thing being on the other side for the first time.
Seeing these kids get to just be kids and have fun, and also learn new things and challenge themselves the same way I remember it happening with me and friends, around me filled me with such joy.
One of the best things is how inclusive and encouraging the community is.
Children who go to this camp and others like it not only get to meet and build strong friendships with others going through similar things, but also have opportunities to try a variety of things, which for a number of reasons they might not be able to any other time.
From activities like arts & crafts, to sports, to something like the adventure ropes course, the camp’s attitude is challenge-by-choice. It is amazing as well as inspiring to see and be a part of everybody cheering each other on and working together to help each other succeed in whatever momentary or longer goals we have.
I count myself fortunate to have been on both sides of the fence at camp. As a camper for many years before volunteering and becoming a counselor, I have also made many strong and close bonds which have outlasted our time together at camp itself even, and have continued becoming stronger long afterwards still. Friends like Erika, who I met in 2006 in her first year, and Courtney, who I met in 2009 in her last year; both would go on to become two of my closest friends.
Having been a part of this magic from both sides of the spectrum has really made an impact on me, and some of the great counselors I have had as a camper myself or worked with now that I am one of them have all in some way inspired me to want to go on in my life helping people. This coming September, I will enter my second college program and start a road to Social Work.
I sat cross-legged in one of the trauma bays in our Emergency Room this morning when my phone sent me a reminder about this post. It was supposed to be a post about how far I have come since getting diagnosed, and all that I have accomplished in the months following the diagnosis that changed my life forever.
But at the present moment, I didn’t feel like writing a post about how far I had come. I was still sitting on a hospital bed, and it felt like nothing had changed much at all.
And yet even with everything that has stayed the same – the hospital visits and the tests and the doctors and the treatments and the chronic pain – something has changed.
Last week I walked across a stage and graduated from high school. It was something I never in my wildest dreams imagined I would be doing. I have spent so many nights in the hospital never daring to let myself dream about that moment. I was afraid the minute I wanted it, it would be snatched from my hands. And so it was safer to not let myself dream at all.
In the months since getting my diagnosis, I began to create a yoga practice for myself. I became serious about writing. I learned what I was made of. I returned to, and graduated from, public high school. I got a job. I got news that my health is stable. I am going to college in the fall, if all goes well.
I am finally able to catch a glimpse of the life I never imagined I would have.
As I was sitting in the ER today, I saw a girl who was just diagnosed with a chronic illness. She looked tired and exhausted. She looked the same as I did following my diagnosis 2 years ago.
Looking at her, and then looking at my reflection in the mirror, I realized how far I have come. Even though I’m still struggling daily with my illness, I have come so far in my recovery. I have done things I never thought possible.
It’s so easy to forget when I look at the places where everything has stayed the same. I’m still sick. I’m still in pain on a daily basis. I still have to be very careful about what I eat and what I do and I have to be consistent with my treatments. But there is a quote that says if you put one foot in front of the other, sooner or later you’ll look back and see you have climbed a mountain.
I’m not at the top yet. Maybe I never will be. But when I stand on this ledge and look down, I see how far I’ve climbed. It’s a climb, still, but I promise the view is great.
What’s your story?
It’s a big question. If you are a teenager or young adult with a chronic illness, we bet you’ve been asked it before.
We are Disease on my Sleeve, an organization dedicated to promoting confidence through stories among teens and young adults with chronic illnesses. This is our blog. We are Disease on my Sleeve, and we are asking you the big question - what is your story? But we are asking it a bit differently.
Our logo is a heart made out of pills - half blank, half shaded. Part of each of our lives is irrevocably shaped by our past, but we are all more than our histories.
Your story is not what you have or how you got it.
Disease on my Sleeve is a home for stories of hopes, dreams, and ambitions. We do not want to hear your diagnosis story; we want to hear who you have and will become.
Your story is what you do with what you have.
Disease on my Sleeve is more than a blog; we are a community of positivity and empowerment. We want to hear YOUR story- tell us how you have been empowered or have empowered others.
From left to right, we’re Katie, Jaden, and Sami. You can learn more about us, the Founding Editors, by clicking on the red logo of a handprint at the top of the page. The handprint symbolizes our hands reaching out to yours. Only with your involvement are we a team. We need you to help us build a community of storysharers.
See the yellow circle with two pills inside a heart? There, we will share an ever-growing list of people we “heart.” We want you to know who inspires us. Help us build our community; share who you love with us!
We hope to empower you, but we need you to empower us. Click the megaphone at the top of the page to learn how to share a story of positivity and empowerment with us, and more importantly, with a teen or adolescent in need of a touch of inspiration.
Welcome to Disease on my Sleeve.
Jaden, Katie, and Sami
Founding Editors of Disease on my Sleeve