Why I refuse to mourn who I was prior to Crohn’s: A birthday reflection

This week, I turn 36-years-old. Birthdays are a time of reflection, celebration, and excitement. Last month marked 14 years since I was diagnosed with Crohn’s disease. A chronic illness that has shaped my adult years and my identity.

I recently saw a post on Instagram about imagining life prior to illness. IMG-8194Prior to the challenges and the hurt that coincide with having a disease that you expect to have until your dying day. It’s heavy and can be overwhelming. There’s no cure for IBD and once you are told you have it, your world and your life is forever altered.

When I see childhood photos of myself and think back on my wonderful memories with family and friends through my college years, that girl often feels foreign to me. There are a few things I wish I could whisper in her ear:

“Stop taking your health for granted.”

“Soak in this feeling of invincibility.”

“Make the most of every single day.” IMG-8201

“Enjoy how carefree it feels to never have to worry about what the next day will bring.”

“Soak in the comfort of never needing medication or going through painful pokes and prods.”

“Have more empathy for those around you who aren’t as lucky.”

the list goes on. Hindsight is 20/20. I can’t fault myself for floating through life the first 21 years. I’m glad I had no idea of what was to come. At the same time, I wouldn’t trade what the last 14 years have given me:

They’ve brought me debilitating pain that built my strength.

They’ve brought me sorrow that’s made the sunshine feel extra bright on my shoulders.

They’ve brought me fear that’s been replaced with resolve. 

They’ve brought me lonely moments that are now filled with the laughter of my little ones.

They’ve brought me years of feeling unlovable, but then finding magic with a man who never once shied away from my illness. image (66)

They’ve brought me extreme vulnerability that’s now coupled with gratitude. 

They’ve brought me scars internally and externally that I now see as battle wounds.

They’ve brought me years of embarrassment, that’s transformed to a scarlet letter that I wear with pride.

They’ve brought me feelings of worry that have been washed away by clarity and perspective.

On this birthday and moving forward, rather than mourn the loss of who I was up until age 21, I choose to celebrate who I’ve become the last 14 years. While this illness has tried time and time again to rob me of my joy, it’s provided me with evidence of my resilience. Since my diagnosis, I’ve worked full-time as a TV news anchor, reporter, and producer, I’ve gotten married, I’ve had two children in 21 months, and I’ve become a steadfast patient advocate. balls-1786430_1280Crohn’s has shown me that just because I get knocked down with a flare, doesn’t mean I can’t bounce back and be better. With Crohn’s, life often feels like you’re in the passenger seat and your fate is out of your hands. Rather than sit back passively, I choose to grab the wheel. Cheers to 36!

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

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!

When I looked in her eyes, I saw myself

I recently met a 15-year-old girl who was diagnosed with Crohn’s disease. Like many parents of teens newly diagnosed with inflammatory bowel disease, her mom reached out to me for words of advice and comfort. It’s not too often that upon learning this news and connecting with families that I get to meet both the parent and teen in the same room, at the same time.

Maybe this can be chalked up to pregnancy hormones. Maybe it was because my heart hurt for her. It was probably both. But, I kept getting emotional looking at her and talking to her. My eyes welled up with tears because without her saying a word, I felt and could see her pain. In that moment, I felt like I had time traveled back to the first few months of my diagnosis.

I felt the loneliness and isolation she was feeling, even though she was in a roomful of people. I watched as we ate dinner and she quietly sauntered in the hallway, behind the kitchen table to make her way to the bathroom…more than six times in less than an hour. I listened as people questioned why she wasn’t eating…and told her to get ready for dessert. Her mom telling us as she was in the bathroom that she’d dropped four pounds in the last week and only had an Ensure to drink that day. I told everyone to stop talking about food and allow her to come into the kitchen when she felt ready. I remember all too well how it feels when people are watching you like a hawk, questioning every morsel you put down your throat. Food and the relationship we have with it while taking on IBD and navigating familial relationships and friendships can feel like psychological warfare.

She pulled her mom to the side after she overheard her telling me about her medical issues and told her not to tell anyone. I touched her arm and with tears in my eyes, I quietly told her I’ve had Crohn’s for more than 13 years…and that I understood how she felt. I pointed to my 18-month-old running around and to my baby bump and told her that if she wanted a family in her future, it was still possible, despite her disease.

Oftentimes, it can be difficult to connect with teenagers, because they seem guarded and are private about their disease. For many, it’s still a top-secret part of who they are. I get it. I took me nearly a decade to share that I had Crohn’s disease with the world. There’s no sense in rushing anybody. We all find the time that is right. We all know when we feel strong enough physically, mentally and emotionally to open ourselves up to questions, opinions and thoughts from those around us. It’s completely normal to want to keep others (especially strangers) at arm’s length, because during those impressionable young years, you don’t want to be seen as different. You know the moment you say, “I have IBD.”… it’s truly your reality. Your identity, how people view you…it’s all forever changed.

A message for parents

Parents—I know it must be SO difficult to feel like you’re on the outside looking in at your child in debilitating pain as they deal with the burden of a lifelong disease for which there is no cure. If this is a “new” disease to you and your family, you probably feel overwhelmed by all the information on the internet, what you’re hearing from specialists and what is best for your child. Lean on people like me, who live your child’s reality. Ask us the questions. Talk to us about how it feels. Equip yourself with knowledge and understanding so you can get acclimated to life with chronic disease in your family, just as your child needs to. It’s a learning process for every person in the family. Have patience. I know it sucks. I know there are times you just feel like screaming from the tallest mountain… “WHY IS THIS HAPPENING!!!???” I know you are reminiscing back to when life seemed so simple. When health was never in question. There’s no use in romanticizing the past.

You must embrace your new normal and be a pillar of strength for your child. If they see you waver, if they see you upset and frantic, that will directly impact how they feel. Communicate with your child and see if they’d like to talk with someone else who is living with Crohn’s disease or ulcerative colitis. If not now, maybe later. The IBD family is strong, resilient and welcoming…and we’re not going anywhere.