Silencing the Stigma: How one man is using his patient journey to empower others

This week—a guest post by IBD patient advocate Ziyad, from The Grumbling Gut. IMG_20181104_220957_401Ziyad shares how his experience taking on Crohn’s inspired his decision to become a radiographer and show fellow patients they are much more than just a number. I’ll let him take it away…

“Don’t let fear keep you quiet. You have a voice so use it. Speak up. Raise your hands. Shout your answers. Make yourself heard. Whatever it takes, just find your voice, and when you do, fill the damn silence.”

Those words were spoken in an episode of Grey’s Anatomy by Meredith Grey and I couldn’t have put it better myself. I was officially diagnosed with Crohn’s disease in 2007 having spent the previous year experiencing symptoms and not knowing what was going on. My absences from school – and to some extent my social life – didn’t go unnoticed and when asked where I was or if I had to cancel last minute, I’d just give my standard air tight excuse of “something came up last minute”.

Truth be told, I wasn’t ready to tell anyone outside of my family about my diagnosis, so I did the only thing I could – kept it a secret. IMG_20181122_171801_972I was afraid of what people might say, what they might think of me or if they might start treating me differently – I didn’t want to be anything other than the supposedly ‘healthy’ 17-year-old with a ‘normal’ life. As a result, I spent twelve years living with Crohn’s in silence. I was embarrassed, because let’s face it, talking about your bowel habits isn’t the most glamorous topic.

If we fast forward to now and having gone from being so secretive about my IBD to talking about it so openly and sharing my experiences through social media – you may ask “what’s changed?”.

The answer is simple – I’m not afraid anymore. I refuse to let fear keep me quiet.

Using my voice to beat the stigma

It took me a long time to realize that not only do I have voice, but I could use this voice and speak up to beat the stigma that held me back from sharing my story for so long. I also believe there’s no point of speaking up if my actions don’t match what I’m trying to achieve, which is why I started to volunteer for Crohn’s & Colitis UK, the charity giving a voice to people with Crohn’s or Colitis. IMG_20181129_204053_117

Anyone that has IBD knows the impact it can have on your daily life, but my IBD helped shape my career. Having spent a fair share of my time in hospitals being a patient, I got used to the hospital environment and now work as a diagnostic radiographer. My IBD exposed me to the radiography profession early on, having all my x-rays and MRI scans done to diagnose and monitor my disease. Shortly after being diagnosed and referred to a specialist I started the pleasant journey of getting treatment for my Crohn’s.

As everyone and their IBD is different, some medications may work for some and won’t for others so at the time there was a lot of trial and error and it felt like ‘let’s throw what we got at the wall and see what sticks’. Some of these treatments would make me feel even sicker due to the side effects and it really did feel like I was being treated as a list of symptoms and not as a person. Long story short, I changed specialists three times before finding one who treated me like a person.

How being a patient helped guide my career

Having experienced life with Crohn’s first hand has given me incredible insight as to how to provide better care for all the patients that I encounter on a day to day basis. I try to give my patients the opportunity to speak up, use their voice and be heard because of what I went through in the early stages of my IBD diagnosis. It can get busy in hospitals, especially with the increasing patient load and shortage of staff. IMG_20190210_202149_996It can be easy to fall into the ‘conveyor belt’ motion of one in, one out, to try and manage the workload. But it is in these busy moments, where taking a few extra seconds to ask a patient who looks upset, scared or frustrated if they’re OK, that can make all the difference.

It humanizes the experience for patients and gives them a chance to express themselves. I’ve learned it’s the little things that have the greatest impact in patient care.

My advice to anyone reading this—No matter how tough things get, always find the strength to speak up, because keeping all your pain and worry inside won’t do any good. The more you share your story, the more likely you will inspire someone else to share theirs.

Follow Ziyad on Instagram: @thegrumblinggut, Twitter: @thegrumblinggut, and Facebook: The Grumbling Gut.

 

 

 

Taking on Crohn’s to Get My Life Back on Track

This post was sponsored by AbbVie Inc. Personal opinions and thoughts are my own.

Crohn’s and Colitis Awareness Week is December 1-7. If you have Crohn’s disease or ulcerative colitis, get tips from gastroenterologist Dr. Corey Siegel, a Crohn’s disease and ulcerative colitis expert, by visiting the online Expert Advice Tool before your next trip to the doctor’s office.

The gnawing abdominal pain. The frequent trips to the bathroom. The fatigue that hit me like a ton of bricks. It all became my “normal” the first few years following my diagnosis of Crohn’s disease in July 2005. During that time, I did everything I could to put a smile on my face as I reported the news on television stations in Minnesota and Wisconsin. While I loved sharing other peoples’ stories, I never wanted my own struggles to be uncovered while I was in the spotlight.

I am one of approximately 700,000 people in the United States affected by Crohn’s. Once I left the news desk in 2014, I felt it was the perfect time for me to share my struggles and become a vocal advocate. Rather than keep my story in the shadows, now, I share my journey proudly with hopes of helping and inspiring others as an IBD patient advocate and blogger.

Crohn’s and Colitis Awareness Week (December 1-7) is a time to educate others about IBD and empower those who may be struggling with their disease. It’s a time for patients and caregivers to speak up and use their voices to show that IBD doesn’t need to hold you back from experiencing all that life has to offer. It doesn’t need to prevent you from accomplishing your dreams. It doesn’t need to isolate you from enjoying a full quality of life. That being said—it takes effort on your part to listen to your body, recognize the symptoms and manage them accordingly with your health care team.

Crohn’s disease is a chronic inflammatory bowel disease (IBD) characterized by inflammation of the gastrointestinal (GI) tract. It can affect any part of the GI tract, from the mouth to the anus, and is not contagious or caused by food. IBD is a progressive disease, which means it can get worse over time if you are not proactively managing it. It’s also an invisible illness – I look like everybody else, no matter how I’m feeling on the inside. Those with IBD often internalize their struggles and keep their pain to themselves. It’s as if an inner conversation begins with every meal or beverage, moment of stress or excitement and twinge of pain.

In July 2008, almost three years to the day following my initial diagnosis, I found myself dealing with Crohn’s symptoms spiraling out of control. I was the morning anchor for ‘Wake Up Wisconsin.’ Deep down, I knew something wasn’t right. I was headed home to Chicago to celebrate the Fourth of July with family. I ended up being hospitalized over the holiday with an abscess the size of a tennis ball in my small intestine. I watched the fireworks reflect off my hospital room window with my mom. I felt broken and exhausted by yet another setback.

My gastroenterologist entered the room and talked candidly with me about the need to change my treatment plan to minimize the progression of my Crohn’s. While it was a daunting and emotional conversation, it’s a conversation that changed my life as a young woman with Crohn’s. I had my whole future ahead of me. I knew I needed to make changes and get my life back on track.

I’m here to tell you that despite my diagnosis of Crohn’s at age 21, I was still able to accomplish it all. The first decade of my disease, I worked full-time in the television business and spent time at a public affairs firm. I fell in love with an amazing man who sees me for so much more than my disease. We got married in 2016. We have a healthy toddler and we’re expecting a baby in 2019.

Crohn’s has shaped my perspective and shown me the strength I possess within. It’s taught me to slow down and listen to my body and to appreciate the beauty of a ‘feel good’ day. My IBD journey has been one of highs and lows, smiles and tears, and everything in between. I wear my IBD diagnosis as a badge of honor because it’s something that has tested my strength and perseverance, but it hasn’t robbed me from becoming all I want to be.

If you have Crohn’s, it’s important to work with your doctor (sooner rather than later) to create a monitoring and treatment plan focused on long-term success and minimizing disease progression. Prepare for your next doctor’s visit with the help of gastroenterologist Dr. Corey Siegel and the online Expert Advice Tool.

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Disclosure: This post was sponsored by AbbVie Inc., a biopharmaceutical company, and should not be construed to constitute medical advice. Personal opinions and thoughts are my own. I am not a medical professional and am not qualified to give medical advice. Please talk with your doctor about your individual medical situation.