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I Hurt Everyone Around Me Because I Was Angry About My Life with Crohn’s Disease

Becoming Ugly

Every day I would mindlessly run my fingers through my hair until I would have clumps in my hands and then I’d casually toss my hairballs on the floor next to my hospital bed. My hair loss was excessive – it’s something called telogen effluvium and can occur because of medical trauma, like surgery for instance. I had been in a flare-up for over a year, underwent 2 emergency surgeries, and was very malnourished. So hair loss it was.  I did this tossing of hair onto my hospital room floor robotically; devoid of attachment or feelings. 

A year of high doses of oral steroids at home and then IV steroids in the hospital resulted in my entire back and most of my face being covered in painful, cystic acne. 

I hadn’t showered in weeks because I was too sick and in too much pain, the fresh scar down my abdomen looked gruesome, and my body became very underweight.

There was no showering, wearing real clothes, brushing my hair, and definitely no wearing makeup. Instead you were likely to find me with any combination of blood, feces, pus, and other nasty things somewhere on me and/or my hospital gown. I smelled like someone who hadn’t showered in weeks with a dash of rotten TPN. 

Oh yes, I was ugly, but it wasn’t because of those physical things I just mentioned. I was ugly on the inside; ugly where it counts most. 

Ugly Where it Counts

The worst is yet to come

This was the first time I had ever been through major surgeries or ever had to spend months in the hospital. At this point I had already been inpatient about 4 months with no end to my complications seemingly in sight. I had the fear of the unknown pumping through me and fear is a powerful thing.

After my J-pouch was hooked up I would have leakage when I would fall asleep yet when I was awake during the day I had trouble emptying it. I became afraid that this would never stop and that I would keep having accidents at night for the rest of my life. 

That came with it’s own set of fears – I was in a unhealthy relationship and had somehow convinced myself that I would have to stay in it because no one else would want me this way and if we did end up breaking up then I would have to be alone forever because I was so disgusting. Who would

want a girl in her 20′s who has been through so much and has accidents every night? 

I am so gross. 

My fear convinced me that I didn’t deserve better and that my future was nothing to look forward to. I was so weak and underweight that I had to have someone help me do everything. I needed help to walk to the bathroom, to dress and undress, to push my IV pole when I walked, and to clean up my vomit and shit after they left my body; usually out of my control. All of that made me fear that I would never have independence again. I was having complication after complication and even my doctors and my surgeon seemed to lose hope and not know where to go from there as they consulted with doctors from other hospitals to see if they had any ideas or any patients that had similar experiences. 

Then there was the pain. Dear heavens it was like the Dark Lord Voldemort himself used the Cruciatus curse on me. Seconds seemed like minutes and minutes seemed like hours and all I could do was watch the clock in my hospital room hoping to fall asleep or anything just to have some time without the pain. As my fears spiraled my thoughts

I needed help to walk to the bathroom, to dress and undress, to push my IV pole when I walked, and to clean up my vomit and shit after they left my body; usually out of my control.

became more irrational and the anger inside me grew. The pain, the uncertainty, the fear of the unknown all turned me into an ugly person.  

Taking it Out On Everyone Else

I hate therefore I am
I hate this picture because in my opinion I look so ugly. I wasn't just ugly on the outside though; IBD also turned me into an ugly person on the inside.

I was angry.

Angry that I am a good person and I became sick. Why me? Angry that my friends were out living their lives and finishing up school and I wasn’t. Angry that this was all happening and I didn’t have health insurance and so my credit was messed up at such a young age for something that wasn’t my fault – not like I wanted this disease! Angry that I couldn’t do anything for myself and that people had to help me. Angry that I might not ever get better… it went on and on. 

This was a new kind of anger for me, a deep intense anger at everything that was happening. In addition to being angry I 

felt hopeless, lonely, and depressed. So what did I do? I took it out on the people closest to me. I couldn’t look at them or talk to them about what I was actually feeling because I was so mad about my life. When I did talk… well, I didn’t talk. I yelled. I treated everyone like crap when they were only trying to help me. If someone tried to push me in a wheelchair I would get upset with them and tell them that they were doing it wrong. Same goes for if anyone tried to help me with anything else; I was nasty and hurtful. 

The hardest part of all of this was that I could see the hurt that I was causing them and I really didn’t want to be behaving like that but I couldn’t stop. Anger was all I seemed to be able to express even though I was hurting so bad emotionally on the inside because of other things that I didn’t know how to express yet. I saw the sadness in my their eyes as they feared for my life and watched me get sicker and sicker. All they wanted to do was help me and all I could do was yell at them. 

Eventually one day my mom told me that she was not going to visit me at the hospital anymore because I was so nasty and she couldn’t take it any longer. A few days went by where she 

didn’t call me or come to visit and though I didn’t think it was possible I felt even more lonely. I also felt terrible and eventually called her to apologize and then had to work out how to deal with my feelings in a better way. 

The Power of Hope

'do not be afraid'

You see, my disease made me an ugly person because all of my fear turned into anger and my anger turned me into a hurtful, nasty person. Though I did not like my physical appearance back then I would never call myself ugly. I may have lost the majority of my hair and what hair I did have left was usually matted to my head from laying in a hospital bed for a long time. I was underweight and puffy and had acne and smelled bad… but I wasn’t ugly. I was just sick and I feel sad for myself back then. 

What I lacked was hope. There seemed to be no end in sight to my suffering and when the people in charge of my care didn’t even seem to know what to do anymore I became hopeless. I couldn’t see a future anymore or picture life moving on and getting better. I was fearful that things were always going to be bad and 

that wasn’t a life that I wanted to live. Eventually things improved a lot and I stopped having uncontrollable accidents every night and didn’t have to wear embarrassing adult diapers that were too big on my frail little body anymore. 

I was able to eat again without throwing up and I gained weight and strength and assimilated myself back into the real world and found a new normal. Now years have gone by and though I am still sick and have had more long hospitalizations and scary complications I also have one thing that I didn’t have during those six months in the hospital: I have hope that things will get better again because I have gotten out of that very bad place before. 

I was in a unhealthy relationship and had somehow convinced myself that I would have to stay in it because no one else would want me this way.

Having hope helps you keep looking forward and picture a world that can be alright again. I never thought that time in my life was going to end and when you are that sick for so long it really takes it’s toll on your mental health. I don’t get as scared because I know that it can get pretty bad but more than likely it will get better again. 

Sara

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