Recently dealing with an unexpected Crohn’s flare reminded me of just how overwhelming chronic illness is. It completely disrupts your life and the lives of those around you. Reflecting back on the early days of my diagnosis, I began to think of things I am so glad my Crohn’s mentor told me. After receiving my diagnosis, my head was spinning and I could barely string a sentence together…let alone come up with a plan for living with this new illness. Fortunately, I had a friend that was diagnosed with the exact same type of Crohn’s that I have, and she began to show me the ropes. Well friends, I would like to be your chronic illness mentor. You can think of me as a sister in the fight.
Growing up I had two sisters, one older and one younger. While people often make fun of the middle child, I think they hold a very special place in society. See, middle children get to learn from the mistakes of their older siblings, but are spared from being spoiled rotten like the youngest sibling. Middle children are blessed to peek into the mistakes of their older siblings, which helps them later avoid those same mistakes. So, for today only, you all get to be middle children. YOU’RE WELCOME! Hopefully my blog will help you avoid making some of the mistakes I made. So, let’s go to the tips:
1. Find the relevant society or support website for your illness and learn as much as you can. After my diagnosis in March 2011, I immediately became a member of the Crohn’s and Colitis Foundation of America (CCFA). Through them, I learned about the latest research for Crohn’s Disease, treatment options, and support groups in my area.
2. Assemble a support team. If you read my second blog, then you know I was blessed with a phenomenal husband and he is the captain of my support team. But, the team does not end with him. See, dealing with chronic illness is like running a marathon. You and your team members will get tired, so you need other people that can tag in and out to carry this load. Please keep in mind that your support team may not include a significant other because you don’t have one…and that is ok. Your support team could include friends, clergy, neighbors, volunteers, teachers, or anyone that you feel can offer you the support you need. But, an essential member of every support team is a great therapist, counselor, dula, life coach, or whatever title you use to describe a trained professional that helps others with their problems. If you and the other two voices in your head agree that you are fine and don’t need help from anyone…there is a HIGH likelihood that you are not fine!
3. Do not measure the effectiveness of your support team by the number of members on the team. Quality is far more important than quantity. My team is small, BUT MIGHTY!
4. Take time and laugh at yourself and the illness. Let’s face it, you are probably stuck with this thing. So, why not laugh at it?
5. Find out what resources are available for your illness. On my first blog I posted a Crohn’s support watch. This was purchased from http://www.inspiredsilver.com. This watch, while cute, was a great way to support Crohn’s research and alert others that I have a medical condition. It is both a watch and a medical alert. I would recommend researching your relevant illness to determine what resources are available for you. For example, in addition to the Crohn’s support watch, I carry a restroom access card. If you struggle with IBD, you can get a copy of the card pictured below from http://www.crohnsandcolitis.com.
6. Become stingy with your energy and time! When you battle with chronic illness, your time is VERY precious. You likely start your day with a little bucket of energy and once it is empty, you are done. Given this, be very careful where you use your energy. I learned the hard way that allowing people and ridiculous situations to consume my energy, left me with very little energy when I truly needed it. So, I have become very stingy with my energy and time. I have no issue missing a bbq, dinner, concert, party, baby shower, or etc to save my energy for a kiddo’s field trip or date night with my hubby.
These are just a few ideas to get you started. Hopefully you find one of them helpful or one of the them leads you to helpful information. Life with chronic illness is challenging, but I believe with everything in me that every day above ground, is a great day!