Interview ten: caroline

In this interview, written by Tara, we talked to Caroline. She described her experience living with the rare chronic illness, CIP, beating the odds time and time again, and how to treat those with disabilities or an ‘invisible disability’.

Question One: Caroline! Thank you so much for setting this up and starting another conversation. To start, I’ll let you introduce the subject matter. What is the name of your medical condition, and how does it pose challenges in your day-to-day life? Are these challenges sometimes overlooked, and do you believe people treat you the way you should be?

Hi! Thank you so much for the opportunity to talk about my medical condition in a public space! I hope that I can help raise some awareness. My medical condition is called Neuropathic Chronic Intestinal Pseudo-Obstruction, or CIP for short. I was diagnosed at birth and I am now 19 years old. I’ve lived my entire life with this disorder and, as of now, there is no cure. The best way that I can describe CIP is that it is a disconnect between my nervous system and my digestive system. The signals sent from my brain to my intestines get jumbled up or lost in translation, and the result is that my intestines are uncoordinated. They don’t know when or how to move. CIP keeps me from being able to eat and digest food like a regular person, so I’m on an all-liquid diet administered through two feeding tubes-- one on each side of my body. One of the tubes, called a G-Tube, is surgically-implanted into the stomach and used for intermittent liquid feedings (about 3 ounces at a time) which consist of a substance called Neocate. The other tube-- which has many names including “central line”, “central catheter”, and “broviac”-- is a permanent IV which bypasses the digestive system and delivers a liquid form of nutrition called TPN to the bloodstream. My TPN contains all of the nutrients that a person would normally obtain through orally consuming food and runs on an overnight infusion for 9.5 hours. The G-Tube must be replaced every 4 months (a non-invasive, non-anesthetic procedure) while the central line is replaced every 4-8 years on average (a much more involved surgical process requiring anesthesia). The main challenge/thing that sets me apart from others is that I am not able to eat food, which is something that is seen as essential for human life. Everyone operates under the assumption that everyone eats food, and the possibility of some people not eating food has not even crossed some people’s minds. Therefore, because we live in such a “food-centric” world, it’s a little awkward to tell people about my condition and how it affects my life. Most people, when they find out, are a mix of shocked and sad. They feel bad for/pity me, which tends to make me uncomfortable. Or they ask me very invasive questions, which can make me equally uncomfortable. I understand that the idea of someone not needing to eat food is new to most, but it would be nice if people had less intense reactions.

Question Two: Obviously, I can never be put in your shoes or understand to the fullest extent what you go through. What do you want people to know about the aspects of being a chronically ill teenager that set you apart from everyone else? Are you appreciative of these, and how has your journey to embracing yourself been?

What I always say to describe what it’s like being a chronically-ill teenager/person in general is “one step for you is for steps for me”. Due to CIP symptoms such as low stamina/fatigue and chronic pain, things that may seem really simple to other people (i.e. walking across a school campus, climbing stairs, or participating in PE class) are things that pose significant challenges on me. Of course, I’ve never been afraid of a challenge and I always find a way to do these things, but the point is that it takes extra effort on my part. I’m sure this goes for most people who have a chronic illness as fatigue and pain are common symptoms. Having CIP has also affected my mental health in several ways. I was homeschooled through most of elementary school because of my low stamina and weak immune system. Once I got to middle school, I built up my stamina and it was decided that I could go to school full-time (with a small mid-day break to administer tube feedings and necessary medications). I attended all of middle school and high school as a full-time student. Entering middle school without having any prior social experience from elementary school was definitely a shock. As I’m sure many people can attest to, middle school is a time when bullying and unkindness towards others is at an all-time high. I, being the 4’0 socially-awkward girl, had a huge target on my back. I was the victim of merciless bullying for all three years of middle school and, because I didn’t have the opportunity to develop my social skills in elementary school, I didn’t know how to stand my ground or fight back… so I just let it happen. In addition, I felt lonely most of the time because I couldn’t do what the other kids did. I couldn’t stay out late or go to sleepovers because I had to be on my TPN at night. I sat silent, looking down at my lap, during birthday parties when they would serve the cake or during classroom pizza parties. I constantly caught concerned glances from across the room, no matter how much I reassured people that I wasn’t hungry and I didn’t need to eat. CIP is incredibly rare-- I’ve only ever met 3 other people with CIP in my 19 years of life, and they are all long-distance friendships formed over Instagram. No one in my immediate circle of people had CIP or knew what it was like, which made me feel lonely beyond words. When I had to stand up and drain my tube into the toilet in a public restroom, people would gather by the stall, pointing and laughing about how there was “a boy in the girl’s bathroom”. People called me a freak. Some people even “secretly” filmed me and took pictures of me. I sometimes felt like I was the most hated person in school and I didn’t even do anything to deserve it. When I got to high school, the bullying started to subside, but I became severely depressed once I realized how high my medical bills were. I felt like such a burden to my parents and everyone in my life and felt like things might be better if I weren’t around. CIP also has contributed to a lot of insecurities and body image issues. It has stunted my growth and puberty, leaving me at only 4 feet 8 inches tall at the age of 19. I have a childlike frame and high-pitched voice. My torso is home to over 20 surgical scars, scar tissue and other deformities, as well as my feeding tubes. Sometimes, it’s hard not to feel like CIP has stolen my body and morphed it beyond repair. CIP has caused me innumerable hardships, including being ostracized, bullied, isolated, and wildly different from everyone else around me. However, I’ll always be grateful for these hardships, because they’ve built my character. They’ve taught me the true importance of kindness towards others. They’ve taught me to always stay resilient in the face of a challenge. They’ve taught me how to choose joy and make light of dark situations. I spent many years being resentful and unhappy, but I can say without a doubt that I am now very happy with my life.

​Question Three: In bringing up this interview topic, something you mentioned was that you’ve “..beat the odds and lived a normal and fulfilled life..” That’s an incredible way to let people of similar background and experience know that they’re fully capable of living as they please. What would you say to someone else living with CIP?

Beating the odds is quite possibly one of the things I’m proudest of accomplishing in my lifetime. When I was born, doctors insisted that I would die before I could turn one year old. As I mentioned earlier, I’m 19 now. Despite all of the doubt from other people, I managed to go to public school for 7 years, and I just finished my freshman year of college. I’ve been able to make meaningful and lasting friendships and go out and do things with these friends. I’ve gone to concerts by some of my favorite artists and even met some of them. I went to prom, traveled to New York City, adopted a cat who I love dearly, and had my poetry published and recognized with awards. It took blood, sweat, and tears to get where I am now, but I am beyond grateful for the life and experiences I’ve been able to have. I would imagine that anyone else who lives with CIP is very used to hearing “you can’t”, and my main advice to them would be to take that as a challenge. Prove that you CAN. Don’t be complacent. Make a habit of getting out of your comfort zone (as long as it’s safe to do so) and be unapologetically you. In the moment, it’s the scariest thing ever, but in the end, you absolutely will not regret it. Some of the best experiences of my entire life came from me taking a big leap and trusting the universe to keep me safe. Having CIP doesn’t mean that you can’t explore opportunities and take the world by storm. Put yourself out there.

Question Four: Now, as you’ve previously mentioned, there’s far too much misinformation and preconceived notions regarding those with chronic illness. Have you found anything someone’s assumed about you to be absolutely mistaken? Or correct?

The main stigma that I’ve faced during my time with CIP is that I’m “lying” or “faking being sick”. I think that there are two main reasons why some people think this. One reason is that CIP is incredibly rare and probably one of the least known/publicized digestive disorders in the world. Some people, because they don’t know what CIP is, just assume that it isn’t real. The second reason is that CIP is what some may call an “invisible illness”. This means that people with CIP often don’t fit the mold of what a sick/disable person is “supposed to look like”. People often assume that disabled people have to use visible mobility aids like wheelchairs or canes. The only things which could tell other people that I have a chronic illness-- my feeding tubes-- are hidden under my clothes where no one else can see them. I’m a mostly normal-looking, almost fully-operational teenager, which is not what people think of when they hear the words “sick” or “disabled”. While I’m grateful to be as competent as I am, I wish that people wouldn’t be so quick to put disabilities and illnesses into a box and accuse anyone who doesn’t belong in that box of being a liar.

The other stigma that I face a lot is that people with chronic illnesses are “fragile” and must be constantly protected. While it is true that I do have some physical limitations and sometimes need accommodations, it bothers me when people hover and treat me like I could break at any second. Chronically-ill and disabled people are very strong and competent just like anyone else, and we like to be treated like we’re “normal” people. We want to be given room to make our own decisions and show off our potential. Despite being met with several stigmas and misinformed people throughout my life, I’m also incredibly grateful to have a family and a group of friends who tries their best to understand where I’m coming from and what I’m capable of. It’s refreshing to meet people who are patient and truly seek to understand. I’ve met people who treat me exactly the same after they find out about my CIP as they did when they didn’t know. These people have lifted me up and given me confidence. Several strangers I’ve told about CIP have been genuinely fascinated and wanted to learn more. They asked well-phrased and non-invasive questions and asked me if I could point them towards online resources for further research. I want people to know that I am more than happy to educate about CIP so long as the person asking me questions has good intentions.

Question Five: Thank you again for doing this with us. The support for our growing page has been amazing. Do you have any last words for those who haven’t learned much about living with chronic illness, especially from a young age? I’m sure they’ve gained insight from what you’ve told us, and we hope to speak with you again in the near future! Take care!

Thank you for inviting me to do this! It was really cool to get to talk about everything and hopefully inspire or educate some people. I would just like to encourage everyone to take the time to recognize and try their best to understand the people in their life who struggle with chronic illness. Help and encourage them but do not smother them. Lift them up. Show them kindness and respect. Be patient with them but don’t be afraid to challenge them from time to time. Bottom line: treat them the way you would treat anyone else. They’re people, too.

​As far as CIP goes, it’s one of the least-known and least-researched digestive disorders. If you’re intrigued by what you’ve read, please consider looking into further reading. Try telling your friends and family about it and raising awareness. Donate to organizations like the International Foundation for Functional Gastrointestinal Disorders (IFFGD) if you can. Any little thing helps!