The Visible Parts of an Invisible Illness

Even though crohns disease and ulcerative colitis are invisible illnesses, there are very REAL parts of it that make these diseases visible in many ways. I spoke about body image and how it relates to IBD in this post here http://keepingthingsinsideisbadformyhealth.wordpress.com/2012/12/04/body-image-and-ibd/. I promised to expand on this a bit with a couple pictures. This picture below is the only photo I have of me on prednisone that was taken when I was down from 80mg to .5mg every other day. Meaning, I had less than a week to go and looked dramatically better in this picture than I had (yes, hard to believe). prednisonepic

I was 14 and in 9th grade. I wouldn’t take the bus to school because I was so embarrassed about the way I looked. My dad took me to school everyday and at the end of the day, I would walk all the way around the entire school where my mom would pick me up in the back so I saw the minimum amount of people. I went from an emaciated, pale looking girl who just got out of the hospital to a blow up doll in a few short weeks. My hair was so thin on my head. I had hair growing in places a person would never want hair to grow. I had developed a lump in the back of my neck from the medication. I had stretch marks (and still do) all over my breasts and my entire torso from gaining so much weight in a short amount of time. I had acne everywhere. Prednisone also brings on insane mood swings and insomnia. It makes you incredibly hungry but I barely ate because I felt like the way I looked was my fault. I was so young and I didn’t have any real understanding of what was happening to me. I was supposed to start a  new school this year but couldn’t bare the thought of meeting new people looking like this (only a lot worse since remember…I was basically off of it at this point).

The impact medications has on many patients with IBD is unimaginable. As you can see, this medication in particular causes many side effects and the ones you see are just the cosmetic ones (and then again, I am wearing a lot of clothes to cover my body). There is a whole other layer to the side effects that most of the medications used for crohns and ulcerative colitis do to patients internally that we cannot see.

After going through so much stress, anxiety, turmoil, frustration, physical pain, disappointment, instability, unpredictability, emotional exhaustion and basically living life on a roller coaster never knowing when something might go wrong, it takes its toll. Emotionally, physically and everything that comes alongside of it. This picture below is of me in August of 2010.

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I look kind of scary here, I’ll admit it. I can’t tell you how  much I weighed but I can tell you I was dealing with a hell of a lot. I had the kock pouch in this photo as you can probably tell given the absence of the ileostomy. I was on the edge every second of every day. I barely slept and barely ate. I also worked out excessively because it was the only way I felt like I had any control. It was the place where I could take out my anxiety and where I could have some “me” time. I would get up at 430 in the morning and force myself to work out for two hours because I needed that routine so badly. I was trying to get through summer classes so I didn’t have to spend another semester at Manhattanville College so I was on overload. I had 6hrs of classes a day, was babysitting a few times per week, and was basically out every night. I was just powering through with no ability to stop. I needed control. I needed routine. Ulcerative colitis may not have directly caused me to be in the position I was in here, but it certainly did indirectly. Being diagnosed with UC changed my whole perception and attitude about food. If I needed to be productive, I just did not eat. I didn’t want to worry about anything else so it was just easier, simpler not to eat.

129971139216569733_rrliJwKB_c Invisible illness or not, living with crohns disease or ulcerative colitis is NOT easy. The more we can do to educate and spread awareness for these diseases, the more the public will understand and the easier it will be for the 1.4million people currently living with IBD in the United States.

  • val0525

    Very Brave of you, Marisa. Yes, we do need to keep doing as much as we can to raise awareness.

    Bravo!!!

  • Sherri

    OMG…I am shocked! I think I have surpressed so much that It jars me to see those photos and read this blog. I am overwhelmed with emotion and all that comes to me is that you are SO brave, so strong to have survived all you have AND to be able to share it/relive it with the world. You never cease to amaze me my GF. You are awesome and I am so proud to be your Moms

  • Jodi

    OMG is right Sherri-
    I didn’t see you during those times, but I am so sorry you have been through so much you are so brave to share these photos and your story behind it. It makes it that much more real. and also makes me see REALLY how far you’ve come. You are an amazing, strong, brave woman. Not everyone could bare her soul and body as you have-these pics and all of your blogs. YOu are changing perceptions of crohns/colitis for me and many others, as well as inspiring those who are experiencing some of the same things you are/were.
    Love you Maris. You really are amazing!!!

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