Patient Blogs | Crohn's Disease
What Working With Crohn’s Disease Is Like for Me
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Having an autoimmune disease and working is no easy walk in the park. Heck, having an autoimmune disease and NOT working is no easy task either. However, for those of us who are able, balancing autoimmunity tends to force us to choose between work, school, fun activities, our health, and where we spend most of our energy each day. With some autoimmune conditions such as Crohn’s disease, this can feel like a see-saw balancing act that when pressured, tips too far to one side or the other.

Crohn’s disease is a condition that flares when it wants to regardless of what you may or may not have time for. This can be especially true if you are someone who stays busy and may not always give your body the time it needs to rest. Simple things like getting enough sleep (and rest), reducing stress, focusing on diet and nutrition, and learning how to slow down and live in each moment can help to really improve one’s condition. However, if you are constantly busy (like me) then one or more of these important things can sometimes be pushed aside or missed.

Throughout my life, I have been known to push myself to the limit. In all honesty, that is probably one of the rare things that I have done consistently. As a child, I was constantly playing and working creatively.  There was rarely ever a time when I would just sit and relax by watching a movie or reading a book.  I was always active, running from one activity to the next, and barely taking any time to soak in what I was experiencing.  In my teenage years, I was involved in multiple clubs, was active on multiple sports teams, and found additional side activities to occupy my time.  I rarely spent any time at home and always had one if not two or three activities to do after school hours each day.  From practices to meetings, games to performances, and sports to enjoying the outdoors, I was always doing something. 

At the same time, I was also always busy going to doctor’s offices, visiting specialists, and having a multitude of tests and lab work done. My life consistently seemed to be like a roller-coaster ride. At the top of the hill, I would be feeling on top of the world. My mind would be clear, life would be organized, and I wouldn’t miss much school, work, games, or events. But then, just like with a traditional roller coaster in real life, once you reach the top of that hill, you come screaming back down. The rest of the ride is a bunch of ups and downs and twists and turns, and you find yourself coming to a screeching halt somewhere toward the end.

With Crohn’s disease, you never know when your symptoms may hit. You never know when that climb to the top of the hill will peak and you’ll be holding on for dear life as you try to navigate symptoms, follow up with doctors and specialists, and try to rest, relax, and recover as you ride down that first hill. I’ll be the first to admit that most of the time, even if you won’t take the time to rest, eventually your body will force you to slow down. You’ll come screaming down that hill, whether you were ready for it or not, and you’ll have to ride out your symptoms until they’re ready to subside.

This can make holding down any traditional form of employment difficult at best. In order to find something that may work for you, you must be willing to first admit that your condition may slow you down at times. When interviewing, many professionals will tell you not to share anything about your health condition. In the past, employers may have looked at having health conditions as a negative; however, over time, some employers have now seen what strong workers we really are. Personally, I have always been 100% honest and upfront with employers about my health conditions and even if I didn’t land a certain job, I never thought of it as a missed opportunity. If an employer couldn’t see past my health challenges, then I felt that they weren’t really the employer for me anyway. I wanted to work for an employer that had high expectations for their employees but also led with compassion.

I can honestly admit that I have been working from home for the past 9-plus years and if I didn’t work from home, I more than likely would have lost my job many years ago. Because let’s face it, when you have Crohn’s disease, your symptoms are bound to flare at the most inconvenient of times, keep you from leaving the house on time, and most of your available “vacation” time will be used for those dreaded doctor’s appointments. Crohn’s disease is no walk in the park but working with it, even though it’s not impossible, is harder. Working from home, even though this option can also be challenging, seems to work for me.

Overall, through my experiences, I’ve learned that the only way to make this journey SEEM any easier at all is to take that time off, to take that time to rest, and to take that time for extra, EXTRA self-care. When you’ve been dealing with autoimmunity for as long as I have, you start to learn those small signals that your body uses to tell you when you’re doing too much, or you’ve pushed yourself too far. Even though I’m really good at ignoring these signals most of the time, I’m trying to really keep my focus on finding a healthy balance. Because sometimes, this healthy balance is what keeps you moving forward toward any goals you might have.

  

 

Photo Credit: Tetra Images via Getty Images

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Tina Marteney

Tina Marteney

Diagnosed since 2016

Tina Marteney has lived with Crohn’s disease for over 15 years (and she’s only 35!). She is an education leader, autoimmune advocate, and published writer. She is also a mom, dog mom, and wife. Marteney has made it her mission to help others learn how to live well with illness. She shares health tips, patient stories, and helpful resources on her blog and Instagram. Connect with her here.

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