Tag: support network

Airport reflections: When you spot IBD support from a mile away

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I’m sitting at O’hare International Airport in Chicago. Fresh off taking the stage in Des Moines for a patient symposium. And an image of a young couple in the crowd keeps popping into my head. As I spoke, I noticed. I noticed how he squeezed her hand when I talked about love and inflammatory bowel disease. I recognized how he touched her shoulders when I reminisced about how it feels when friends turn their back on you, as you grapple with a chronic illness. As I stood on that stage, witnessing their not-so-subtle interactions, I knew that girl had found someone special.

Each time I speak, and in many of my articles, I refer to my husband, Bobby. natbobbySince the moment we met in 2013, and through all the ups and downs my Crohn’s disease has caused in our lives, he’s been my safe place and my protector. During my speech, I talked about how everybody needs “a Bobby.” A person who sees you for more than your disease. A person who doesn’t shudder at the thought of seeing you at your lowest for days on end in a hospital bed. A person who gets the day to day management and emotional toll chronic illness takes on not only the patient, but the couple and the family.

After my speech, this same couple who stood out to me in the crowd approached me. I immediately told them they had grabbed my attention. I said let me guess—I pointed to the young girl and said, “you have IBD.” IMG_9348Then I turned to her boyfriend and said, “and you are her rock and her caretaker.” They laughed and told me I guessed right. Isn’t it amazing how easy it is to spot this type of support? I was a complete stranger, once in her shoes. Young. Dating. Wondering about my future. Their names are Emily and Kellen.

Ironically, Emily and I both underwent bowel resection surgery days apart in the summer of 2015. Her boyfriend at the time, decided it was too much—and left her. Then she met Kellen. As we joked, “her Bobby.” IBD throws us curve balls, it challenges us in unimaginable ways, but it teaches us, too. One may think of surgery and setbacks as the lowest of the low during the patient journey, but often those moments bring about the greatest highs and crystal-clear clarity. Both about ourselves—what we’re capable of…and about others.

As I was talking to Emily and Kellen it brought tears to my eyes, because I felt so happy for her. IMG_9347Only 22 years old, so much of her life ahead of her. And she’s found the person who looks at her, despite her illness, and loves her for it. The Bobbys and the Kellens of the world are the real deal. If you haven’t found yours yet, trust me…they exist and they are out there.

It was my husband Bobby’s birthday yesterday. The special milestone days always bring out the mushy side in me. I can’t help it. So, as I sit in this airport, and think about how lucky Emily is, I’m also reflecting on how lucky I am to have found my ride or die, who will be with me all the days of my life, just like my illness.

 

The difference between sympathy and empathy with chronic illness

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Sympathy and empathy. Two different words with very different meanings. Especially to those of us in the chronic illness community. The first nine years I battled Crohn’s disease, I kept my diagnosis as private as possible. Only close friends, family and co-workers knew what I was going through behind closed doors. I did this because I didn’t want sympathy.

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Back on the news desk following a bowel obstruction hospitalization, would you ever guess this was my first show back?

I didn’t want people to look at me differently. I didn’t want to be judged or looked down upon. I didn’t want to be viewed as “less than” by my peers. When you choose to suffer in silence you close yourself off to support, you close yourself off to empathy.

Since sharing my patient journey in November 2014 with the public, I’ve realized the power of empathy. How it feels when those close to you and complete strangers reach out to offer support, words of advice and choose to show compassion. By definition, empathy means, “the ability to understand and share the feelings of another.” The definition of sympathy is “feelings of pity and sorrow for someone’s misfortune.”

When we choose to share our story, we open ourselves up to not only support, but criticism. People who believe we are advocates as a way of seeking attention. People who try and dumb down our personal experiences because they feel we share to get pity. People who believe we want others to feel sorry for us. This could not be further from the truth.

I share my experiences with Crohn’s disease as a way to inspire and educate.

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I’ll always remember how my cousins and brother rallied around me at the Take Steps Walk in Chicago.

The last thing I want is for someone else to feel sorry for me. There is no reason to act like I have it worse than you or that you feel bad I’m not “healthy.” I am healthy, I just have a chronic disease that makes my life a little more challenging than yours. The challenges Crohn’s has brought into my life have been difficult, emotional and trying—but with each setback, comes a much stronger comeback. I am stronger and better for the trials I have been faced with.

I don’t want your sympathy. I want your empathy. I want you to reach out and see how I’m doing, because you genuinely care. I want you to show interest when I bring up my disease, rather than change the subject…or walk away. The lack of empathy and disinterest hurts more than anything. It shows you who’s a surface friend…and who is a real one.

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I was hospitalized six months into my relationship with my husband. His support was amazing from the start.

Think about how you’d like to be treated and talked to, if you dealt with an invisible, chronic illness that wreaked havoc on your body without warning. A disease that you do all you can to control with lifestyle and medication. A disease of constant unknowns.

When you conversate with those in the chronic illness community—think before you speak and please choose to be empathetic, rather than sympathetic. Your efforts may seem minimal to you, but they mean more than you know.