Find Your Own Tribe
It’s no secret. No matter how many times you tell your loved ones how you are suffering with Crohn’s symptoms, unless they actually have the disease themselves, they just cannot comprehend what we go through on a daily basis. They may try, and give unsolicited advice as to what you should eat (or not eat) and how you can better manage your pain, but at the end of the day, it can make you upset because managing Crohn’s just isn’t that simple.
So, to that, I say, “Find your own tribe”.
Support from others who suffer from Crohn's or UC
Finding others who also suffer from Crohn’s or UC has been life-changing for me. As a Co-Chair for our local chapter’s Young Professionals Group of the Crohn’s and Colitis Foundation, I have been able to connect and form close friendships with those who know exactly what I go through living with this chronic disease. We understand each other on a deeper level and can talk about things that others cannot comprehend. And, when one of us has to reschedule a lunch meeting or gathering due to not feeling well, we all understand.
Social anxiety and canceled plans
I never realized how much anxiety I suffered from subconsciously that dealt with my Crohn’s disease and making plans until I met others who also suffered from Crohn’s and UC. Taking the possibility of having to cancel at the last minute due to stomach issues off the table made me relax more when making plans, and subsequently, helped my stomach stay settled since I wasn’t nervous about what may happen. It was also a sigh of relief to go to a restaurant and see someone else also asking the waiter a dozen questions about how food is prepared and what is in it so that my dietary restrictions were also understood. These small things such as making dinner plans or going to a party are often taken for granted by those without Crohn’s or UC but I know my fellow IBD-ers completely understand all that goes into making plans and committing to them.
Advice and understanding from people who have been there
These friendships are great to have in my life, in addition to my other friendships with “non-Crohn’s” friends. I am not saying to completely disregard your old circle of friends, but by adding some new people to your “go-to crew” who understand what you are going through will help during your down days. You will then have an outlet and an ear to listen to your problems, and who can possibly offer advice that actually works because they had gone through it themselves. And, you can completely be yourself and not worry about putting on a brave face when you feel lousy or are in pain.
Meeting IBD friends through support groups is a great way to know that you have others whom you can trust with your personal medical journey, as well, so not only are you getting valuable information on how to manage your disease, but emotional support and encouragement, too. Finding your own tribe of fellow Crohn’s and colitis patients will make you feel like you are no longer alone and can provide you with the comfort and resources that you have been seeking in others who do not understand.
Which aspect of awareness week are you most excited about?