Living With Crohn's: Let's Share Our Victories
I have found in the past 13 years of living with Crohn's disease that it is those who suffer the most who are the most vocal. When experiencing a flare or a setback, it is easy to reach out to the community, loved ones, and friends, and vocalize how you are feeling, what isn't working, and how miserable life is, in general. We tend to share status updates when taken to the ER and make it known which foods we can and cannot eat.
The full picture of life with Crohn's
However, living with Crohn's isn't always miserable, and we aren't always sick. But when we feel well, we never talk about it. We never randomly share with others that we are having an energetic and productive day because our Crohn's is behaving. What about when our biologics are working, giving us the life back that we had been yearning for so long? Nothing is ever mentioned.
What if we talked more about how we feel physically and emotionally when we are in remission? Perhaps the stigma around living with Crohn's could be changed if others saw that it is possible to also live a normal life with a chronic illness.
For the newly diagnosed: it's not all horror stories
I feel that if I were a newly diagnosed patient and did research on forums and social media about how others who have had the disease live, I would be freaked out of my mind because nothing but complaints are posted. And the truth is, that is not always the case. So, let's be louder about the good parts.
I want to hear more from patients who have Crohn's but who are also athletes. I want to see individuals who had a terrible few years living with Crohn's now thriving and living their best life. I think the public deserves to understand that while we still suffer sometimes, have dietary restrictions, receive medication via IV on a monthly basis, or may get easily fatigued, that we are so much more than that and actually have great lives.
My lows with Crohn's... and my highs
Personally, I had a rough few years with Crohn's from 2009-2014. I couldn't find a biologic that worked for me, couldn't get through a calendar year without being hospitalized at least once, and my mental health surely took a toll. However, that all changed with a modification to my diet and starting vedolizumab in 2015, leading to remission in 2016.
Since then, I left my corporate job and started my own health coaching business, got married, had 2 children, and am due with my third child this year. I had a slight hiccup with my health in 2021, but am still in remission today. Stories like this ever get shared. Why?
Partially because individuals don't think it's worth noting when things are going well. Also, misery loves company so those who are suffering the most tend to be the most vocal, hoping others will join in on their painful experience. And lastly (which I think holds me back from always sharing), is that individuals feel guilty for sharing this great life they are leading while others are still suffering from the same disease.
There is hope for good outcomes
But, staying quiet helps no one, whether it is good news or bad news. There are thousands of people around the world being diagnosed with IBD daily, so we owe it to them to get the full picture of what living with Crohn's is like. And there are others who are trying to learn about the disease because their loved ones were just diagnosed with Crohn's or UC and they may be fearing the worst.
It's not all bad, and most of the time, it can be quite good. If you are someone who is suffering, perhaps you can benefit from hearing a happy ending knowing that, someday, this could be your reality, too.
So, let me hear it. Let me hear about the amazing life you are living while also living with Crohn's. Was it always great? Did you have any years that were robbed by the disease, but then reclaimed? What does your life look like on the other side?
How open are you about being diagnosed with IBD?