Okay, I’m gonna come out and say it–Don’t try to fix me! I have very good reason to feel the way I do, and I want to share it with others so they see the reality of this disease. Being honest about what emotions I’m going through is helpful for me and helpful for others going through the same thing. I appreciate people that have suggestions, like taking probiotics or drinking nutrition shake concoctions– I know it comes from a place of caring. And hey I’m all for being a guinea pig and trying out new things to see if they help! But I’m going to do my research first. However, If you think you have the answer to my problems, I’m sorry, but you don’t. No one has the answers for this!
As a woman I understand the need to fix things and make things better. It is our nurturing side. We just like to do that, it helps us feel in control or something. But the reality is, Crohn’s Disease does not have a cure. There is no fix. There is little known about why it even occurs except that there can be certain environmental triggers, a genetic susceptibility and it involves a complicated immune system response.
Changing my diet, taking medications, probiotics, or vitamins will not magically cure me. These things can only help prevent symptoms from worsening, ideally promoting remission. Remission doesn’t mean cured either. It means that you just aren’t having symptoms right now, you still have the disease. And the disease is different for each individual. So one thing that works for one person, won’t necessarily work for the next, because our bodies are different. It is one of the most frustrating things about managing this disease!
The sad truth is that 70% of people with Crohn’s Disease will require surgery eventually. And 30% of those people will experience a reoccurrence of symptoms within 3 years, 60% will experience reoccurrence within 10 years. (Those are statistics I grabbed from the Crohn’s and Colitis Foundation website, I will link the resource below.)
Now–All that mumbo jumbo being said, how do you really show support for someone with Crohn’s disease then? Here are a few of my suggestions–
1. Listen! Just listen, and hear what they have to say! Respond with what emotions you think they must be going through! That validates their feelings! I can’t tell you how amazing it is to hear someone gets how I feel! It’s just like, Thank you!!! I’m not going crazy then!
2. Take your own initiative to learn about what they are going through. It shows you care. It touched my heart when I learned that my mother had done her own research on my disease. Try checking out the resource I have linked below from the Crohn’s and Colitis Foundation which gives a ton of facts on the disease, if you are interested in learning more.
3. Show you are thinking of them in your own way! I have one friend that likes to post adorable animal videos on my social media to make me smile–I love her for that! I get daily emails from my father that are either funnies to get me smiling, or they are inspiring to help me stay strong! It lets me know he’s aware it’s not easy, but he’s thinking of me. I also live 10 hours away from my family, so it means even more to feel that support from far away!
Just knowing that someone is thinking about you/what you’re going through, possibly understands what it’s like for you, or just takes the time to listen– is comforting and heartwarming. That is support! It’s the simplest answer, but the most impactful.
To my fellow Crohnies –I would love to hear what support means to you. What has helped you most through your struggles with this disease?