Why is Crohn's disease an "invisible illness"?

Kathleen Blanchard's picture
"Crohn's Disease Warrior Patrol" founder talks about why IBD is an "invisible illness"
Advertisement

Michael Weiss, an attorney and Crohn’s disease patient has battled the inflammatory bowel disease for years. Having been diagnosed at age 21, Michael spent years in and out of the doctor’s office trying to understand what was wrong with his body. Since his diagnosis he has undergone more than 20 surgeries and been through over 200 hospitalizations. Now Michael is actively helping others who are battling Crohn’s disease in a variety of ways. Weiss is the founder of the “Crohn’s Disease Warrior Patrol”. One of the difficulties for anyone with IBD is that it is an "invisible illness". In other words, the pain of Crohn's disease cannot be seen like a limp or other physical handicap.

I had an opportunity to speak with Michael to understand more about why Crohn’s disease really is an “invisible illness”, which anyone dealing with IBD already knows. But few people understand the extend of disability that accompanies IBD.

Patients often suffer when doctors don’t have the time to address the variety of symptoms that can result from the disease. Even worse, Crohn’s disease manifests differently in each individual. Because there is no cure and the disease is thought to be brought about by an autoimmune response, any system in the body can be affected. In Michael’s case, some of the treatment for Crohn’s has compromised his health matters even further in ways his physicians still can’t pinpoint.

The Crohn’s Warrior Patrol

Weiss, who is now disabled from Crohn’s, formed his own non-profit foundation to help other people. Having understood that only others with the illness can provide needed TLC to patients battling the ups and down of Crohn’s, he now pairs people with others who are newly diagnosed to help them find the support they need to move forward.

One of his websites, hospitalpatient.com, is a welcoming “virtual” home for those with IBD who are seeking information. Michael has an expansive perspective, addressing how the disease affects one’s ability to work, caregivers and friends.

Advertisement

He is also the founder of the Crohn’s Disease Warrior Patrol where you can sign up to partner with a “veteran” Crohn’s disease or IBD patient if you are newly diagnosed and need help. You can also volunteer to help others. In many instances, “Crohn’s Warriors” travel to assist other patients.

“When I asked for “Warriors” to signup to help others, people bombarded me with their willingness to travel 4 states to sit in the hospital with a newly diagnosed Crohn’s patient,” Michael told me.

Michael’s next endeavour is to produce a film to help those with any “invisible illness”, whether it is Crohn’s disease, ulcerative colitis or other. His professional background is as an entertainment lawyer and film producer.

He has also written a book, titled “Confessions of a Professional Hospital Patient” that is both humorous and inspiring.

According to one Amazon review: “This book will have you laughing, cringing, maybe even crying as you easily identify with the emotions the author experienced -- if you have spent much time in the hospital. It's a very unique world set inside the larger world we all live in. Entering a hospital changes many of the rules the patient is used to living by. The longer you stay, the more you learn. I have spent many days and weeks in hospitals and for many of the same reasons as discussed in this book as I too have Crohn's Disease. These stories will talk to anyone with hospital experience and will help you understand the life of a Crohn's survivor.”

According to Michael, “People with Crohn’s Disease’ many patients. seem to have a VERY DIFFERENT JOURNEY, even if they are on the same level of severity given the disease’s broad spectrum of severity. Thus, I think a Documentary featuring Crohn’s Disease Patients sharing their personal perspectives about the same medical issues juxtaposed against one another’s will tell the story of Crohn’s Disease in way I never could. I also want to get it all captured in a Film because once I am done editing, I can focus on distribution and then my continuing health problems will not affect my effectiveness as a Crohn’s Disease Advocate.

If you want to be an advocate for Crohn’s disease, volunteer or just donate to help others with IBD, visit Michael’s website. Read what he is doing to help others. For Michael Weiss, dealing with Crohn’s disease has been easier through helping others. He also shared how valuable engaging in regular exercise has been for him. When I asked Michael what advice he has for those dealing with IBD, he told me the secret is to keep looking ahead.

Share this content.

If you liked this article and think it may help your friends, consider sharing or tweeting it to your followers.
Advertisement

Comments

I have had Crohn's for over 50 years. Doing fairly well since the removal of my large colon.
Thank you for sharing Selma. Is that called Proctocolectomy? I close relative of mine is struggling with Crohn's and am wondering if this may be the way. What is the life like after that?
The removal of the large intestine entirely is called an ileo-anal pull through or total colectomy. With an ileo anal pull through the patient usually has a reservoir (J-Pouch) internally like I do. My entire colon was removed and I have an internal reservoir with no outside appliance. My surgery was in 1992, diagnosed then with ulcerative colitis. I now have crohns disease. I'd be happy to discuss this with you. Crohns is manageable. I suggest you look on the web for a ton of information on bowel disease and post surgery.
Very informative information. Thank goodness I haven't had a ticket since I was a teenager however over the years I have been pulled over and panicked in similar situations and like you Michael my integrity is everything and I did the same thing and showed my scars. Luckily It ended ok but you are so right after watching your video I will never do that again! It only take a second for a innocent situation to turn into a tragedy. Thank you for sharing!!!