What If We Changed the Conversation About Crohn’s?

I have been living with Crohn's disease since 2009 and working with those in the IBD community since 2018. During this time, I have seen and heard a lot of the same sentiments about the disease:

"No one understands."

"I can't do anything outside my house."

"I am so tired all the time."

"There's nothing I can eat."

And, the list goes on.

Focusing on the negative

I know these statements to be true due to both my personal and professional experience; however, I must admit, I get tired of hearing the same things over and over. Correction, I am tired of LIVING the same things over and over. 

Only stating the negative prevents us from living a life that is full of joy, hope, and health. What if we were to change the conversation about living with Crohn's to one that offers guidance and optimism instead of hopelessness and rage?

What would that do for our mental health (that inevitably affects our physical health) and how we live our daily lives? How would that change our outlook for our future? And, what kind of positive impact would this have on the Crohn's community as a whole?

Changing how we talk about our Crohn's

Let's take a look at the above statements one at a time. Instead of saying "No one understands," perhaps seek out your local Crohn's & Colitis Foundation chapter or a local support group to find others who understand exactly what you are living with daily. 

Social media is also a great way to connect with fellow IBD patients, as most patients have the words "Crohn's, UC, Ostomy" etc. in their handle name and/or bio if their posts are primarily about their disease. You are definitely not alone, and I am sure you know that there are others out there who understand your symptoms and how you feel. 

Maybe they're not your immediate family or colleagues, but finding your tribe elsewhere can help you feel like you are understood and are definitely not alone.

Creating a positive space at home

Instead of saying, "I can't do anything outside my house" because of urgency, chronic fatigue, etc., turn it into a positive by thinking, "I created this home that is my sanctuary and I can find comfort and peace while being here."

Be sure there are ample light and soothing colors to make you feel comfortable and happy. And, in these COVID days, the entire world is practically at your fingertips so embrace dialing into Zoom hangouts with friends, take up a new hobby like yoga (no one knows if you pause mid-way through to use the bathroom!), and discover ways to embrace the outside world while staying in the comfort of your own home.

Proactively managing Crohn's fatigue

Chronic fatigue is no joke. I suffered from it for years and still have my days where I am just drained. However, repeatedly saying, "I'm just so tired," isn't doing your body or mind any favors. Understand the symptoms of your chronic fatigue and develop a habit of scheduling your day around it. 

Maybe you have the most energy in the morning so put your important work events then and schedule an hour in the afternoon for a nap. Or, maybe starting your day later is better for you so talk with your employer about working later hours. 

It's one thing to complain about a chronic issue and it's another to complain but not have a plan. Do your best to accommodate your needs, and listen to your body so you can rest when warranted, and taking action will make you feel more empowered than simply stating how tired you truly are.

Plan ahead for your dietary needs

I get questions about food and diet all the time. Eating healthy while living with Crohn's can be somewhat challenging, but that doesn't mean you have to eat sleeves of Oreos after a mac and cheese dinner because that is all that you can handle. 

Identify a list of foods you can safely eat – even if it is only three! – so you know that when in any situation, you can always lean on your go-to "safe foods" rather than saying, "There is nothing I can eat." Cooked veggies (potatoes, carrots, green beans) and skinless fruits and melons are often safe, as are lean protein and healthy fats. 

Rice and chicken broth are also common "safe foods" among Crohn's patients, so keep your pantry stocked with your go-to foods and be sure to pack them when traveling so you are not obligated to eat something that will upset your stomach or (in my opinion, the way worse option) starve.

The power of changing the dialogue about Crohn's

As you can see, we are able to change the conversation about Crohn's and while all of the above statements may be true, that doesn't have to be our entire truth. We are capable of change and taking matters into our own hands, and it is amazing what the power of the mind can do in order to make us feel better physically. Carry on, Warrior!