#P2PEP16
This past weekend, I was given the opportunity to travel to the University of Michigan and speak with a group of patients at the Patient to Patient Education Project (#P2PEP16). It was such an honor and a privilege to be able to meet even more IBD advocates, doctors and nurses around the world.
Acceptance
Topics were assigned to each advocate. I had two topics. The first was Acceptance. To give you a quick rundown, I talked about the basic stages of grief. They are:
- Denial – “I am fine! I don’t look sick. Just a stomach bug…”
- Anger – “Why am I not getting better! Why does my body hate me!?”
- Bargaining – “Maybe if I just make a few changes, I can reverse it.”
- Depression – “This is it. I will never be ok again. I am not ok. I’m scared. I’m sad.”
- Acceptance – “I will get through this. I’m not going to let this disease take over!”
When you are dealing with a chronic illness (Crohn’s, UC, indeterminate colitis), you tend to grieve for your former life. Upon initial diagnosis, most people denied they had a problem. I know I did. I thought, “Meh! It’s just a stomach bug that’s irritated my hemorrhoids! No big deal!” I remember even fighting to NOT have a colonoscopy. I was too young for that, right!?
Slowly, I got angry. A disease? I have a disease?! But I’m a healthy person! I have a life! The anger and frustration was only made worse by the abdominal pain and the Prednisone. I would snap at everyone. I would beat on the bathroom walls in fierce anger and frustration due to the pain and the fact that I just wasn’t getting “better.”
I started trying to rationalize and bargain. I thought if I made a few dietary changes I could reverse the problem. I thought, maybe I could make restitution for whatever it was that I did to get me into the situation.
My disease slowly started crushing me and the depression set in. I couldn’t see past my disease. Things weren’t getting better. I was doomed to be locked in my house day in and day out. It was miserable.
Eventually I was able to “rise from the ashes.” I realized that I am not my disease and having a disease doesn’t make me a bad person. I was going to fight it with every fiber of my being. I am NOT going to let IBD stop me!
I discussed ways of coping with your disease. Let go of your self-deprecating thoughts. Allow yourself to get angry. Allow yourself to cry… but don’t let the disease consume you. Fight it. Don’t let it win.
Take a rain check if you need to. Don’t feel pressured to go out if you’re not feeling well. You are not your disease! You have a disease.
Find support. The CCFA has a list of support groups that meet around the country. If there aren’t any in your area, go online. Twitter, Facebook and Instagram are some really great places to find people dealing with the same things you are. Just type in some hashtags like #IBD, #Colitis, #Crohns. Doing this will give you instant connections with other IBD ninjas.
Resources
My second topic was on resources. I’m not going to list all of them here (see the video below for a complete list). I gave various websites where you can find Financial Counselors and Therapists to help you cope with your diseases. I gave informational resources such as the CCFA, Ostomy.org and iasupport.org. I also gave some product recommendations such as Poo~Pourri, OstomySecrets and bidets (be looking for a review for bidets coming VERY soon).
I wish I could have videos of my presentation, but that didn’t happen so, I put the video below together. I had such a great time and I hope that I am able to do this again next year!
