You are not a burden if you have IBD

When I was 21, in the matter of one week I received an IBD diagnosis and had my heart broken. My boyfriend from college who had previously treated me like a queen, never visited me in the hospital and broke up with me the day I returned home.

I’ll always remember walking into my parent’s bedroom and telling my mom about the break-up. My body frail. My arms battered with bright purple bruises up and down. The weight of a lifelong disease and 22 pills a day hitting me head-on with every emotion possible. My mom’s response, “Well, you’re not perfect in his eyes anymore.”

From that point forward, I worried about the invisible Scarlet Letter of my illness and how it would impact my love life.

Would a man ever be able to love me, for all of me? Crohn’s and all?

You are not a burden.

The recent advice column shared in the New York Times entitled, “Is it Ok to Dump Him Because of His Medical Condition,” plays into every fear and every worry IBD patients grapple with. While Crohn’s and ulcerative colitis can happen at any age, people are more frequently diagnosed between the ages of 15 and 35. Finding out you have a chronic disease with no cure in those youthful years of life—often prior to finding a life partner or starting a career path, is incredibly overwhelming. The fear of the future and what is to come with your hopes and dreams is nearly debilitating at times.

So, it’s pretty freaking ironic when the author of “The Ethicist” who considers “readers’ ethical quandaries” responds back to this question about breaking up with someone because they have Crohn’s by saying:

“Committing to this person may be committing to a life as a caregiver”… and… “You don’t owe it to anyone to accept that burden.”

You are not a burden.

not a burden2Referring to people with any chronic illness or disabilities in this way is not only hurtful, but extremely ableist. You can’t assume everyone with IBD is going to need a caregiver in a partner. If the author had any idea about how Crohn’s manifests, he would know that the disease is a rollercoaster…oftentimes years of being able to manage, followed by hardships, setbacks, and flares and back again.

As a 36-year-old married woman and mom of two, I have referred to my husband as a caregiver, but he’s more so my source of support and someone who sees me for much more than my disease. He would never think of me as a burden. He would never have considered breaking up with me because life could get complicated with my disease. He sees my disease as a part of who I am, but recognizes I am so much more. not a burden 3

You are not a burden.

To the 25-year-old single girl with ulcerative colitis reading this. To the parent of the child with IBD worried about whether their little one will ever find love as an adult. To the guy being talked about in the NYT article who most likely was broken up with—believe this:

You will meet people who turn a cheek once they find out you have IBD or suddenly show disinterest. It sucks in the moment. It feels like you’re getting punched in the gut. But use that pain to recognize that type of person isn’t meant to be your person. Take that heartbreak and use it to your advantage. Set you bar high. Settle for no one. Use your disease to shed light on people’s true colors. Who is going to be there when the going gets tough? Who lifts you up when you’re too weak to stand on your own? Who sees strength in your vulnerability with your health and the way you take on life? your are not a burden5

You are not a burden.

I’ve had Crohn’s for 15 years (next month!). Last night I needed to take a pain pill to quiet the gnawing pain in my abdomen. This morning I had to make a fast dash to the bathroom multiple times in front of my husband and in-laws while my kids needed tending to. I apologized for needing to go to the bathroom so many times. Even as a veteran patient who’s four years into marriage with a man who loves me unconditionally, the words of that damn article rang out in my mind. I felt the guilt and wonder creep in….am I a burden?!

No matter how long you have IBD, no matter how well you have it managed, there are still moments where you feel less than your peers. There are still moments you can’t keep up. There are still moments if you wonder whether you are enough.

Just remind yourself…and I promise to do the same…YOU ARE NOT A BURDEN. And shame on you New York Times…as a journalist, I expect more. And so do your readers.

Love and IBD: What I wish I would have known

Love doesn’t always come easy. Especially when you have a chronic illness like Crohn’s disease. Dating, relationships and finding “the one” becomes a bit more complicated when your health isn’t on par with that of your peers. Before I met my husband Bobby, I had several eye-opening experiences that left me feeling unlovable and unworthy.

When I was diagnosed with Crohn’s in the emergency room two months after college graduation in 2005 and hospitalized for eight days, my boyfriend never visited and broke up with me over the phone the day I got home. Prior to my diagnosis we were head over heels in love and talked about the future.

When I was hospitalized with an abscess in my small intestine that was the size of a tennis ball over Fourth of July weekend and on the brink of surgery in 2008, my boyfriend of seven months never visited and told me gas prices were too much (for a 3 hour drive) and told me he preferred to go fishing.

When I was about to jump in the shower for a first date in 2009, I fell to my knees in my bathroom from excruciating pain and had to text the guy and tell him my Crohn’s was flaring and that I was headed to the hospital. He laughed at me and told me it was comical that I used that excuse and should just admit I didn’t want to see him. I was hospitalized with a bowel obstruction that night. Never heard from him again.

These were poignant moments in my 20’s that stick with me to this day. I look at those experiences now as a blessing of course, but hindsight is 20-20. When you’re in the thick of taking on IBD and trying to find someone to spend your life with, these struggles can feel overwhelming and extremely daunting. Not everyone is cut out to be a caretaker, and that’s ok—but if you live with a chronic illness like me, it’s imperative you find someone with a nurturing heart, a patient personality, and a comforting way about them.

bobbyWhen you fall in love with IBD, there’s an extra layer of complexity, trust, dependency, and appreciation. There’s no telling what the next hour will bring. You need to be flexible. You need to be understanding that plans may not go as expected. You need to trust that when the next flare up strikes that you won’t be on your own and that your partner will be there every step of the way.

Imagine doing a trust fall. You need to count on your person to ALWAYS be there to catch you when they least expect it. Bobby3You need to believe that when the going gets tough you won’t be deserted; you won’t be made to feel as a burden. You need to trust that your partner sees you as much more than your disease.

Love and IBD isn’t always sunshine and rainbows, but that’s the case with every love story. It’s navigating unknown waters and knowing that just because you go under for a little while, doesn’t mean you won’t be floating in the calm soon. It’s being vulnerable with the fact that your body will continually let you down, but it’s also capable of surprising you, too. It’s knowing when to ask for help and not being scared to communicate your needs. It’s making sure your partner knows how much you appreciate all that they do, even if they don’t feel like they’re going above and beyond. It’s the comfort of knowing that any minute of the day, you can tell your partner you’re unwell and everything else going on becomes background noise.

If you’re reading this and you haven’t found your person or if you’re unsure about whether your significant other is meant to be, think about the type of person you want alongside you as your #1 confidante for everything in life, including your disease.

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If you feel like a burden, if you’re made to feel like your disease is a joke, if you feel like you’re ghosted anytime your health goes awry, take all those feelings as red flags. Sure, the way some of my ex’s treated me when it came to my Crohn’s was extremely disheartening, but at the same time those flare ups were the truth serum I needed to see people’s true colors. Use this to your advantage.

When you find the person who genuinely chooses to stay, to be your rock, to be your sounding board, that’s when you know you’re where you’re meant to be. IBD causes us to be vulnerable, but it also opens our eyes to the true character of others and helps guide our way for finding love that’s meant to last.

10 Tips for Ensuring Your Significant Other Can Handle Your IBD For the Long Haul

This article is sponsored by Healthline. Thoughts and opinions are my own.

Dating is complicated. Dating can be stressful. Dating can force you to get out of your comfort zone.

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One of my first photos with my husband, Bobby.

When you live with a chronic illness, dating can be downright daunting. When should you bring up your IBD with a significant other? How can you navigate the ups and downs that come along with your illness? How can you reach a sense of comfort when you need to run to the bathroom or cancel plans?

There’s not only one correct answer to any of those questions. But, as a woman who was diagnosed at age 21, who is now 35 and married with kids, I’m happy to share what worked for me. I recently led a Live Chat on Healthline’s IBD app about this topic. The main areas of concern revolved around significant others failing to grasp the severity of the disease. It’s difficult to fault what can sound like shortcomings, but being a caretaker isn’t easy. Not everyone is cut out for it.

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Celebratory post- colonoscopy cheesecake!

And that is ok.

Here are my top 10 tips for educating significant others—whether it’s dating or marriage about what your experience as a patient is like.

  1. Bring your loved one along to doctor appointments.

Oftentimes, people have no clue how severe and debilitating IBD is. Let your partner hear it from the horse’s mouth (i.e. the doctor). By sitting in on appointments, not only is it a source of support for you, but a chance for them to ask questions, listen to the discussion, and hear about all that goes into managing your chronic illness.

  1. Have a social worker or counselor speak with you both so that you’re on the same page.

Oftentimes a loved one isn’t acting maliciously; they just don’t know how to cope with what life with IBD entails. Talking with a professional gives you a safe space and an even playing field to ‘air your dirty laundry’ and gather advice about actionable ways you can improve your relationship.

  1. Communicate when you’re in pain—don’t sugarcoat or downplay your symptoms.
    If you’re hurting, say it. IMG_7446If you’re struggling, tell them. The more you keep your mask on and your wall up, the more your partner will think you have everything under control and that your IBD isn’t much of a “big deal” in your life.
  2. If your feelings are hurt—articulate why. Resentment leads to stress and can activate symptoms. Be brutally honest and open. You can’t expect your lover to be a mind reader. By bottling up your frustration you may take out your anger in a big way, when an issue could be solved and nipped in the bud before it becomes bigger than it needs to be.
  1. Connect with fellow IBD patients on Healthline’s IBD app.

Whether it’s a live chat, reading articles, or matching up with fellow patients, Healthline’s new IBD app is a space where we all get you. We’ve all been there. We’re all standing ready. Ready to lift you up. Ready to answer your questions. Ready to listen to you vent and share advice. Advice that can make a major impact in your most personal and important relationships. Because at the end of the day, you want someone who loves you for all of you, and that includes your IBD.

  1. Share blog articles and social media posts from fellow IBD advocates that may be able to articulate what you’re going through.

Sometimes as patients, we’re going through so much but it can be difficult to put into words. While each person’s disease presents uniquely, chances are we’ve gone through similar experiences. If you read an article that resonates or see a post on social media that hits close to home for you—share it. This is an easy way to casually show the person you love that this is what you’re going through. A simple email with a link to an article—works wonders.

  1. If you want your person by your side at procedures and during hospitalizations, say it.

During the live chat, there was some discussion about fiancés and husbands not going to procedures or being by the bedside during the hospitalization. That a put a lot in perspective for me, as my husband has never left my side when I’ve been hospitalized (not even for an hour) and has gone to every colonoscopy.

Photo by J Elizabeth Photography www.jelizabethphotos.com

Photo cred: J. Elizabeth Photography

I’ve never had to ask. Bobby just does that because he wants to. If you want your significant other there, tell them. The disease is isolating enough, the last thing you need is to be lying alone in the middle of the night with your racing thoughts and the beeping machines.

  1. Be with someone who you can be vulnerable with.

IBD isn’t pretty. There are days where we’re cooped up in the bathroom. There are times we’re in the fetal position for hours. If you feel at ease at your worst with your person, that’s a good sign. Recognize how you feel when you’re at your lowest point and at your best. Pay attention to how they respond when the going gets tough.

  1. When the red flags are waving feverishly in front of your face, don’t be afraid to walk away.

Listen to your gut. You know deep down if you constantly feel like a second thought or if your partner repeatedly lets you down. If they make you feel guilty, less than, or put off by your patient experience, time to say buh-bye. Trust me, you will count your blessings in the future.

  1. Take them along to local Crohn’s and Colitis Foundation events. IMG_8059

By attending local events you’ll be able to connect face-to-face with fellow couples and families living your same reality. You’ll discover how much you have in common right away. This also enables your partner to have someone who “gets” what it’s like to be a caretaker. Set up a double date or a time to hang out outside of public events.

My Cause My Cleats: How Chicago Bear Anthony Miller is Representing IBD

When Chicago Bear standout rookie wide receiver, Anthony Miller laces up his cleats to take on the Los Angeles Rams this Sunday, his cleats will tell a story. A story many may not be aware of. Anthony’s longtime girlfriend, Alexandra Pounders, has battled Crohn’s disease for nearly 10 years. She was diagnosed at age 14. IMG_4488

This Sunday (Dec. 9), Anthony will participate in the NFL’s My Cause My Cleats campaign, as a way to spread awareness for inflammatory bowel disease (IBD) and show support to his girlfriend. Anthony’s cleats will feature the Crohn’s and Colitis Foundation.

“Being able to bring awareness about IBD through football means a lot to me. When I wear these cleats against the Rams, I’m not only going to be representing my girlfriend Alexandra, but also the millions of people across the globe who suffer from this disease,” said Anthony.

This is the third year for the My Cause for Cleats effort. It’s a way for NFL players to take steps to visually show their support for causes near and dear to their hearts. Anthony and Alexandra have been together almost five years. Alexandra says Anthony has been there for her every step of the way, whether it’s attending doctor visits or motivating her to stay strong during setbacks.

“It feels amazing to know there is someone by my side who cares so much for me that they want to spread awareness about this illness. IMG_4487Anthony has seen me fight for so long. It makes me feel like I’m not going through this alone,” said Alexandra.

“We are thrilled to see several NFL players, including Anthony Miller, raise awareness of Crohn’s and colitis through this year’s My Cause My Cleats campaign,” said Michael Osso, President & CEO of the Crohn’s & Colitis Foundation. “More than 3 million Americans live with these diseases, and, like Anthony, even more are touched by them as loved ones of patients. Using their platform as professional athletes to speak out about Crohn’s and colitis not only helps educate the public about the seriousness of these diseases but also underscores how wide-reaching these diseases are and how important it is to have the support of loved ones.”

Alexandra’s advice to the IBD community is to put your personal needs first and try to keep stress to a minimum, while accepting support from others.

“Surround yourself amongst people who may not completely know what it feels like to be in your shoes, but people who are willing to be patient with you and love you on the days that aren’t so great. Focus on being the best possible you that you can be in every aspect…mentally, physically, emotionally and surround yourself amongst people who truly care about you, it’ll be so much easier to overcome the obstacles you face with this disease. Stay positive. Hold on tightly to your faith. And don’t let this disease define you,” said Alexandra.bears

Chicago is my hometown and where the majority of my family lives. As a Bears fan and as a Crohn’s disease patient advocate who was diagnosed in July 2005, seeing professional football players put causes like the Crohn’s and Colitis Foundation in the spotlight means a great deal. Check out the #mycausemycleats hashtag on social media to learn more about the cause.

The power of assuming positive intent with chronic illness

When someone questions how you manage your illness, or seems to belittle your patient experience, it’s easy to get combative and think the worst. But, recently—while on Twitter, I saw a fellow patient advocate and friend of mine respond to a tweet by saying “Assume Positive Intent” (API). This is the first time I had ever heard of the concept. It intrigued me immediately. Like most people, sometimes when words are said or actions are made—I immediately jump to conclusions and internalize what I think the person meant. Part of this is being sensitive and part of this is life with a chronic illness. office-620822_1920There aren’t a whole lot of “safe spaces” for those of us to feel understood and connected with.

Social media allows complete strangers and even those close to us to be keyboard warriors. People often feel like they can hide behind a screen and be hurtful. At the same time, just like with texting—posts on social media can be interpreted incorrectly. Rather than lash out or get defensive, take a moment to pause, gather your thoughts and remind yourself that most people wake up each day with a desire to live life in a positive way and do good in this world.

By not getting caught up in others’ actions and intent—we’re freeing ourselves of the stress that can be a key trigger to our inflammatory bowel disease and that has detrimental effects on our mental health. You will feel empowered simply by taking a moment to think about how you’re going to respond to someone else. You can’t control others, but you can control how you feel and how you react. say-yes-to-the-live-2121044_1920

No one is perfect. We all make mistakes. At the end of the day, by giving others the benefit of the doubt—you’re able to change the way you approach conflict and you’re able to rid some negativity from your life. I’m not saying never stick up for yourself and let everyone treat you how they want, but use this strategy as a way to handle your personal relationships and how you respond to others. It will say a lot about your character and make you feel in the driver’s seat, at a time you normally may feel out of control.

So, here’s my challenge to you. The next time you feel a guard go up or when you feel disappointed by another person’s words or actions—assume positive intent. bob_natalie_proposal_6615-107As someone who’s battled Crohn’s disease for over 13 years, I constantly find myself needing to take a step back and remember that the only person who’s lived my journey is me. It’s up for me to tell my story. It’s up for me to share it. It’s up to me to communicate to those when my feelings are hurt or I’m disappointed. But before I jump to conclusions, I need to assume the other person is trying to help me or learn more about my experience—rather than ruin my day or hurt my feelings. API all day, baby. Try it. Trust it. Live it.