A photo of you I took in August. We woke up at 5am for sunrise on the beach.
To my 17-year-old sister with Ulcerative Colitis (UC):
When you go off to college soon you will have days when you aren’t able to go to class. When you email professors to let them know, you’ll be too ashamed to tell them what’s really going on. You’ll tell them you’ve been throwing up all night and you’re afraid to leave the bathroom and sit in a classroom. The second part will always be true – you will be on hour three or four of sitting in the bathroom and you are afraid to leave it. But we both know our inflammatory bowel disease (IBD) doesn’t make us throw up.
When people ask you about your health-related absences, you will be vague and say:
“Sorry I was in the bathroom for so long. I was sick.”
And if they prod it will become: “Yeah, totally throwing up for like 30 minutes. Super gross.”
It’s not technically true. But it you will be less afraid to say that than the truth.
I called you in April to interview you for my final article for my final journalism class of college. I had decided to look into why I felt too ashamed to talk about my true Crohn’s symptoms.
I read books on the psychology of shame, interviewed our GI doctor and a psychologist, talked to friends and acquaintances with Crohn’s and UC (that included you!) and I found an overarching trend of shame. The belief that we are “lesser,” that we are somehow “dirty” and “not whole” because of our symptoms, pervaded almost every interview with other IBD patients. The shame here is a painful belief that one has a failure of being, that one is too flawed to be wanted or valued by others and that we will be abandoned.
My research made a lot of sense to me. I knew one of the main reasons I was too ashamed to talk about my symptoms or my illness in general was that I had a reputation to uphold: that of a person who has not failed at being, who is not too flawed to be valued by her peers. I was afraid that if I spoke frankly to friends or, most terrifyingly, boyfriends, they would leave me. This fear of abandonment is at the core of our shame.
I never told you that after I interviewed you on the phone, I sat in my bed and cried. When you were diagnosed at age nine with UC, four years after I had been diagnosed at the same age with Crohn’s, I was so afraid my struggle would become yours. But you found meds that worked for you and you rarely flared, so I wasn’t worried about you when I went to college. I didn’t know that when you called me to talk you had been purposely omitting details about your UC while I was 1,000 miles away.
When I was interviewing you, you told me – in reference to responding to people who try to equate your IBD with irritable bowel syndrome (IBS) – “It’s like, ‘No, you don’t understand. This is a chronic illness.’ But then I’m too embarrassed to tell them my symptoms are much worse. ‘These are my bloody symptoms…’ It’s embarrassing. It makes me feel that I’m less human than they are and it makes me feel ashamed of who I am and how my body works.”
Although for 12 years I had been willing to accept that I could be less of a human because of my Crohn’s symptoms, the second my baby sister said anything of the sort I was outraged you would even be allowed to believe that. That you didn’t believe that you were the smartest, most able, most valued person in the world meant that I had failed my job as an older sister.
I knew something had to change. I had to become, at the very least, living proof to you that you can talk about your symptoms without being abandoned.
In my string of interviews, I talked to a girl with Crohn’s I had met through the Crohn’s and Colitis Foundation of America (CCFA) years ago. I was surprised when she told me she openly talks about her symptoms without any shame. She told me, “If people are curious I have no problem telling them. It’s just a fact.”
She was so matter-of-fact about her symptoms. She insisted that even though those with IBD experience it more frequently (and certainly to a worse extent), everyone is human, and everyone has gastrointestinal distress sometimes.
So I decided to test it out, to report back to you. A couple days later at rehearsal I had to leave for 10 minutes because I wasn’t feeling well. When I came back into the room, one of the girls asked me what was up and I responded genuinely, “Ugh, sorry I was out for so long. Just pooping blood.”
The room went absolutely quiet. I looked at everyone and exclaimed, “You guys knew that! I have Crohn’s – that’s what happens.” The girl who had asked me how I was started laughing, and rehearsal continued like normal.
Except I felt the slightest change in attitude toward me. Much more than the sympathy I felt after I told people I had been in the bathroom throwing up, I felt a sympathy that stemmed from true understanding. If I wanted true understanding and support from my friends, they needed to know what was going on. It was so simple, and I had missed it for so many years.
In the five seconds it took for me to tell my friends the truth, I was terrified they would feel differently about me. And that fear will keep you time and time again from attaining the understanding and compassion of your friends. As impossible as it seems, you need to let go of some of that fear and trust that your friends will do anything for you, and that includes listening to your true symptoms.
My friends will not abandon me. They are my friends because they love me, even if I’m constantly running to the bathroom in the middle of conversations. Your friends are friends with you because you are compassionate and bright. You push people’s intellectual bounds and you bring an optimism to any group of friends you’re with. Your friends value that in you, and no amount of “gross” symptoms you have no control over will negate that fact.
You will be ashamed and scared to tell the boy you’re dating about your disease, and that’s something I’ve experienced over and over. But the most memorable part of those conversations is the fact that they are just so unmemorable. You will say you have something really important to tell them and you’ll worry about it all day, or all week, and then when you tell this boy you really, really like and you really, really want to keep in your life about your UC, he’ll say, “Okay.” And he will not abandon you because you have this disability. He is, like many boys will be, very distracted by your pretty eyes and infectious laugh and your kindness, and he really doesn’t care at all that you have UC. It’s just a part of what makes you, you.
Shame is scary. I won’t lie and tell you it’s not. Fear of abandonment is real and terrifying and keeps so many women with chronic illnesses from sharing what is really going on with them.
But I want to tell you, Sonia:
Even if your friends can’t understand the hell you go through, they want to know how they can help you. No one is going to stop being your friend or loving you because you tell them honestly that you had diarrhea 11 times yesterday and that’s why you couldn’t come to school. No one will abandon you, or think you are a lesser person.
In fact, you are so much the opposite. You are beautiful and smart and, yes, flawed, like everybody else. You’re flawed because you steal my clothes and annoy me on long car rides. Your flaws do not include a chronic illness over which you have no control. I know it seems daunting, but being honest about your symptoms will allow you to let go of shame and this ridiculous notion that you are not as worthy of support and love as those without illness. You are so, so deserving of love and care. All you have to do is ask for it.
This post was written by Alix Kramer, ChronicBabe intern and proud ChronicBabe.