Besides Your Disease, Who Are You?

Besides Your Disease, Who Are You?

crohn's corner

Do you ever feel like your IBD defines you? Let’s face it: It takes up a lot of our days (and nights). Between taking medication, researching what’s new on that front, going to or checking in with doctors, feeling lousy much of the time, trying to get comfortable and everything else, IBD is a full-time job.

As a Crohn’s patient, I admit that I often get stuck in this mire. It all does take time. It is depressing. It makes me forget that I’m so much more than Crohn’s disease.

So I thought I would tell you a little bit about myself, who I am, the other me that is not Crohn’s. First, the most important part of me is that I have a family. My husband and I have been married nearly 27 years, which is hard to wrap my head around. We both grew up and continue to live in New Jersey, where we have spent the last 23 years raising our children.

Our older daughter is 23, a graduate student whose wedding we are currently planning. She’s getting married next year, which may be even weirder for me than having Crohn’s disease! Our younger daughter, 19, is a sophomore in college in another state. Last week, we drove 900 miles round-trip to get her settled in for the year.

We own a rabbit. We didn’t set out to own a rabbit, it just kind of happened. Rabbits are supposed to live about six to eight years on average. Ours is 10. Mostly she sits in or around her cage. She is not too friendly. We’re kind of just waiting for her to decide she’s done.

I wanted to be a writer since I was a little girl. I always read a lot ― my favorite thing to do was read in my room, alone, with the door closed. I literally had a dresser drawer full of books that my grandfather purchased for me. But I always liked to write, too. I liked to make up stories. When I was in third grade, a friend and I co-wrote our first novel. I think I still have it somewhere.

I went to college, met my husband, and got married. I worked in the publishing industry as an editor for years, and then when I was pregnant with my younger daughter, I decided that I couldn’t parent two kids and work in publishing at the same time. I decided to focus on mothering, leaving publishing for some point in the future. I never went back.

I found myself writing on my own, and after many years, published a novel. (I now have published five, with a sixth coming out this winter.) I like to write about families dealing with some kind of disease or medical crisis or condition. I’m sure you’re not surprised. I also like to write essays about my family, and sometimes I get in trouble with them over the topics that I choose to share publicly.

I have friends. I especially love to go to lunch with them. We text all the time. And it’s almost never about how I’m feeling.

I became a great-aunt for the first time this summer, as my niece had her first baby, a boy. I love being with him, and I can’t wait to watch him grow up.

There is still nothing quite so satisfying to me as reading a good novel, though I admit I watch a lot of junk TV ― TLC, mostly.

I am so many more things than Crohn’s disease. I don’t ever want to forget that. But sometimes I do. I don’t want you to forget it, either — about who you really are.  So tell me: Who are you? What do you like to do? And make sure you tell me things about yourself that have nothing to do with IBD. 🙂


Note: IBD News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IBD News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to IBD.


  1. Monique Laurie says:

    Yes I feel that my Crohns defines me.
    I was diagnosed at 45 and I’m now 55.
    I’m married have been for 30 years now and live in Auckland,New Zealand with my husband and currently have two young adult children living with us. We have 3 children Alexandria 27, Nicole 24 and Jake 22. They are successful happy adults now and don’t really need me to sort out their lives but as Alex and Jake live at home I find myself cooking and cleaning for them.
    My passion has always been Interior Design and have done 3 courses. I don’t have the confidence or stamina to start my own Interiors company and found the Design world a tough one to get into so have worked mostly with my husband in our Computer Brokering company since Alex was 5.
    I’ve found it harder to work as my Crohn’s has progressed, so I spend more time away from the business going to the gym, catching up with friends and painting. I feel gulity not being a part of our business but it exhausts me and doesn’t quench my artistic passion.

    • Tracey says:

      maybe make a FB page of your work and just make ur interior design a hobby for now .. like maybe before and after pictures etc.. anything to get ur mind off IBD.. (if that’s possible I know its always there) but maybe that would make you feel better .. Just a thought GL hun

  2. Doug Lusty says:

    I am also much more than Crohn’s disease. I love to go kayak fishing, which my wife an I started this year. It is so much fun getting out on the water, even when we don’t catch fish. My favorite time of the year for sports is starting, football.

    I have been married to my wife for 22 years, which is unbelievable to me. My wife and I have been foster parents to special needs kids. Our special needs kids lived with us for years, not days, weeks, or months. I became a Grand-Uncle on my side of the family this last year.

    Weirdest of all, I am retiring next January, after 32 years at the same place. I am only 54, but I am so tired of working and a few months ago we discovered that through a relatively unknown law, I can access my 401(k) account if I retire after working at least one day in the year of my 55th birthday, and my last employer is where my 401(k) is located. So I am retiring next January.

    • Judy says:

      How wonderful that you will be able to retire early! Thank you for sharing who you are. I hope more of the readers will share their “I’m more than Crohn’s” stories, too. 🙂

  3. Rainy Hickman-Linsdeau says:

    I am much more than Crohn’s Disease. I am 47 years old and have had Crohn’s Disease for twenty years. I have been fortunate that after several surgeries I have had long remissions. I had a flair up in December of 2016 and have been treating with various meds for the past eight months. I am a bookkeeper by trade and work as a trust accountant for a large law firm in Detroit Michigan. I have been with my significant other for two and a half years. This spring I moved into his home and leased out my condo. I love to travel. I always go away during hunting season with my girlfriends and was saddened that this year I had to cancel out on our cruise because of Crohn’s. I am hoping that I will be able to make our annual trip to St. Thomas in February of next year. I too love to read. Barnes and Nobel love me. I love listening to music. I love to cook and bake for my honey. I am a homebody when I am not working or traveling. I have a great support system of family and friends who rally around me when I am sick. My honey retired this spring. I feel bad being sick, because I know he wants to travel more and do more things, but until I get things under control with Crohn’s its just not possible right now. We are going to Petoskey next weekend. I am hoping that I don’t get sick, but I am itching to get away and relax with him. He is very understanding, its me who feels bad for him having to deal with my sickness. He never complains and has always tried to make things easier for me. I am fighting another surgery. I hate the way Crohn’s sucks the energy from you and the way it makes you feel. Your quality of life goes down hill when you are sick. But even in sickness, I am very grateful for my life. I have someone who loves and supports me, a great job, who sticks by me by providing great benefits and helps cover my duties when I am off sick, which has been a lot this year, (Four hospital stays)and friends and family. Crohn’s teaches me to be patient. I love this blog. I enjoy reading it every week. Thank you for giving us a voice and communicating various issues about the disease that we cannot do ourselves.

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