Tag: overcoming the odds

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

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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.

 

 

 

How living with Crohn’s inspires this medical student to make a difference

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There’s never a good time to receive a diagnosis of inflammatory bowel disease. The earth shattering news tends to flip your world upside down. For 27-year-old Alyssa Alda Clements of New Jersey, her Crohn’s disease diagnosis could not have come at a worse time. Alyssa was in her first year of medical school and had recently lost three family members.

“The hardest part about my diagnosis was the time I spent in the hospital or being homebound, because it took me away from my schooling. Having to take medical leaves from my DREAM was so heart breaking. I had wanted to be a doctor since I was three. In time, I started to feel better when we got things under control and was able to go back to medical school and, knock on wood, I am still hanging in here,” Alyssa says.

Being sick never made her want to quit, if anything it made her realize how much we need doctors, especially ones who care. Alyssa says her patient perspective provides her with insight when it comes to the type of doctor she wants to be and the type of care she aspires to provide day in and day out to those who depend on her. alyssa7

“My first trip to the ER nearly killed me because the doctor didn’t believe my pain, told me it was in my head and that I was a crazy medical student, and didn’t even touch or listen to my abdomen. It turned out to be an obstruction and thankfully I listened to my gut and went to a different ER the next day,” Alyssa recalls.

Fast forward a week later, Alyssa woke up from her first colonoscopy to learn she has severe Crohn’s disease in her large intestine, small intestine and rectum. The GI spoke candidly and said her odds of ever becoming a doctor were slim, due to her health. But, Alyssa didn’t let the naysayers stop her from following her dreams.

Becoming a doctor while living with Crohn’s

As many know, working in the medical field is not for the faint of heart. alyssa6The profession entails a great deal of stress, both physically and mentally. Not only are the hours long, but you are exposed to a ton of people who are sick, while you are immunocompromised.

“I have learned so much about empathy and sympathy as a patient, the way some physicians made me feel pushed me to continue in medical school and be a better caregiver than they were to me at my worst moments. I have learned to listen to the patient because I have been ignored. I know just what being a patient feels like, how scary, uncomfortable, painful, that being sick can be, and I want to be there for others who are in that position. When I finally found my amazing care team that I have now, I became hopeful that I could be that person for someone someday,” Alyssa says.

As far as advice for fellow IBD’ers, Alyssa says be honest with yourself and what you can handle. Don’t let your disease limit you, but also know that it’s ok to be kind to your body and slow down when you need to. Alyssa says she’s modified her life so that she’s able to handle medical school and keep her well-being in mind at the same time. She relies heavily on the support of her family and boyfriend and makes self-care a part of her daily life.

Big city, bright lightsalyssa people

Alyssa was recently featured by People Magazine, that’s how her and I connected on Twitter! I saw her inspiring story and immediately wanted to share it with you. She went to New York City and was interviewed as a woman who is overcoming chronic illness. Talk about a great person to represent those of us in the thick of fighting this disease.

Her attitude is admirable, “I want to show anyone that they can be strong and resilient and still achieve their dreams after a diagnosis. I want to show young women and girls with illnesses that they are still beautiful, that their bodies might be constantly changing, but they are still themselves, they are still amazing.”

Bouncing back from difficult days

In her first year of diagnosis, Alyssa was in and out of the hospital. She endured more than 12 bowel obstructions, a PICC line, NG tube and tests galore. While at Disney World that November, Alyssa fell to the floor of her hotel room. She came to find out she had multiple abscesses and fistulas. After four weeks of total bowel rest, she had an ileocecectomy. A total of 13 inches of her intestine was removed. In her eyes, the surgery saved her life. Alyssa has been on Humira for almost five years. She says the new citrate free formula has changed her life (and I must agree!!)

“Days can be hard, filled with pain, fatigue, never ending symptoms, but always know that you are not alone. There is an army of us fighting diseases you can’t see.” You got that right, Alyssa!