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Living life with an "invisible illness"

Updated: Jul 18, 2023

This idea of an “invisible illness” had never been apparent to me until I found myself in a hospital gown, staring at my results with low hopes. For months, I had felt so alone trying to figure out what was wrong with me, why my body was losing weight every single day, why I couldn’t stay nourished with the water that my body needed. Why me? Little did I know, this invisible illness went by the name of Crohn’s Disease. Crohn’s is described as an inflammatory bowel disorder, and while that may sound easy to treat, the journey to treatment is painful and mind numbing. I had been in my first year of college, trying to figure out the normal things that college students had to figure out, while my body was practically shutting down and causing many issues that I didn’t even know was occurring. With the discovery that I had went from 115 pounds to 85 pounds, a dramatic decrease in iron, a stomach ulcer paired with an inflamed intestine, and an inflamed esophagus, I didn’t even know what to do next.

While many may believe that the physical symptoms of Crohn’s could be grueling, such as extreme abdominal pain and cramps, extreme fatigue, vomiting, low appetite, anemia, etc., the toll that this illness took on my mental health was like no other. Already having struggled with depression and anxiety, this diagnosis made it that much worse. I found a quote that I wrote in my journal during my journey of discovering this disease:

"Existing has become a chore to me."

The idea of waking up every day, trying to carefully decide what I can and could not eat for every meal had become a process I didn’t want to do. Sometimes I wanted to go outside for a walk, go shopping, do things that I found fun, but waking up with extreme sickness and flare ups had made every activity no longer fun. I honestly wanted to do nothing. I had no motivation for anything. If my body couldn’t give me the nutrients that it needed, why should I treat my body with such respect? This vicious cycle catapulted me into a depression that I just couldn’t fathom.

The struggle to find the right medication had taken a toll on my body. The first try was with a medication called Prednisone. This was short lasting steroid used to help me gain the weight and muscle back on my body, but the side effects were not fun. I couldn’t sleep, I was constantly hungry, but the idea of food made me sick. This medication also caused me to gain weight in parts of my body that I had become insecure of. I didn’t even want to look at my face that had gained so much weight on my cheeks, the thought of myself was sickening. After Prednisone began causing issues with my bones becoming brittle, I moved to another medication called Pentasa. This medication was absurdly expensive, along with taking 8 pills a day for this to even work. My body couldn’t digest the pills and I broke out in rashes from the ingredients. One of our last hopes had been the option of infusions, Remicade. I had started infusions as soon as I could which are IV infusions of medication for 3 hours every other month. You could say I’ve gotten used to being poked and prodded by doctors rather quickly.

While finding a treatment had been such a relief, I found no importance in taking care of my mental health. I didn’t want to do anything because the smallest thing I did just put me in pain. I didn’t want to go out to eat with friends, as I couldn’t even keep food down. My body had lost so much weight, gained so much weight, lost so much weight, I didn’t want to look at myself. I felt ugly and worthless, but most of all, I felt hopeless. While I found a medication that could potentially work, I was so upset with my body. I had taken care of myself growing up, I didn’t understand what went wrong. What have I done to make my body hate me so much? The level of hopelessness that I felt during just those few months, I would never wish upon anyone. Someone once said to me,

“I wish I could have an illness like you so I could be that skinny.”

To have struggled for years with body image and finally become happy with myself, and to watch my body quickly deplete and attack itself had been one of the most unsatisfying and damaging things I had ever experienced. And to be 18 and struggling with my first year of college, I would have never wished this illness upon anyone so they could get “skinny” like me.

This wasn’t written to be negative and show that I regret having Crohn’s, because having this invisible illness has given me strength that I didn’t know I had. It has made me realize that I would like people to become aware of this topic, as many don’t know about it. For anyone dealing with any type of invisible illness or medical problems similar to this, I hope some of these insights may be able to help you feel a little less alone.

Try to be patient with those learning about your disease; teach them.

At least once a week, I have people ask why I can’t eat certain things, what Crohn’s is, etc. At first, I used to get frustrated having to explain my illness and my strange diet, but it’s important to realize that many don’t know about this illness. Informing people about this is the best way to start spreading awareness towards it.

It’s okay to get frustrated with an adjustment to a new lifestyle.

While Crohn’s is different for everyone, usually after the initial diagnosis, lifestyle has to change. To better my health, I had to start making regular doctor’s appointments, switching my diet, taking care of my body more, and becoming more aware of staying away from germs. While it may seem a little weird that I can’t go eat a salad because of the raw lettuce or that I need to eat an absurd amount of potatoes to keep my proper weight on, accept it! It’s okay to be different.

There will be people who may not want to stand by you through these changes and this illness.

This doesn’t sound hopeful, but I have lost people in my life after receiving this diagnosis. People from past relationships didn’t want to deal with my health issues. Some people just don’t understand the struggle of an illness they may not necessarily see. While this can make you feel alone at times…

Appreciate the people that do stand by you through this illness.

A really important factor to my health recovery has been the people who have gone to appointments with me, the people who try to be conscious of the foods I can eat and the symptoms that I may feel. It’s those kind of people you want in your circle anyways. You don’t want those people that tell you, “it’s just a stomach ache; we can still go out!” You want those that are understanding that you may not be up to going out that night and make you feel like it’s okay to feel your illness sometimes.

While it is important to surround yourself with others through this change, the most important thing is to please, PLEASE… LOVE YOURSELF.

It’s easier said than done to love yourself through something like this. As stated, I did not love myself. I beat myself down, told myself I was worthless and made myself ashamed of my body. The worst thing you can do through this struggle, is to continually hate yourself for it. Try the best you can to implement a proper diet that works for you, try to do some activities like exercise and yoga, even read about your illness so you get to understand it better. Instead of being afraid of it, try to understand it and love your body for what it is.

“If you can’t take it year by year, take it month by month. If not that, take it week by week. If not that, day by day, minute by minute, second by second…” Anonymous

Some important resources for those struggling or just interested in researching and understanding:

For those who may be interested in my recovery and remission, here is an update:

The medicine I have found that works for me is Remicade, the medicine infusions that I mentioned. I have been receiving the medication every other month for over a year, now. While it doesn’t fix every symptom and problem, it has made many of the pains subside. I get what they call occasional “flare ups” usually when I undergo a lot of stress, but compared to the beginning of my diagnosis, I am proud of where I am today. As for the confidence in myself, I can look at myself in the mirror and find myself beautiful most days. My mental health has been helped by therapy and realizing that there is nothing wrong with but an illness that I have been given to battle. While I am battling physical and mental illness everyday, I realize how far I have come and how I can inspire others going through similar stories to realize that they are okay. You’re going to be okay, I promise.

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