Alert
Close

Multiemployer pension cuts and what you need to know about pension provisions in 2015. Learn more

HIGHLIGHTS

Open

AARP VETERAN MEMBERSHIP

Military and Veterans Discount

CONTESTS AND SWEEPS

AARP REALPAD

Introducing RealPad by AARP

AUTO BUYING PROGRAM

AARP Auto Buying Program

Download the ipad App

AARP-iPad-ePub-app

DRIVER SAFETY

Piggy bank on the road - AARP Driver Safety

Take the new AARP Smart Driver Course!

KEEP BRAIN ACTIVE!

AARP Games - Play Now!

AARP BOOKS

Planning for Long-Term Care for Dummies

Get expert advice on planning for your own or a relative’s future care needs.

Webinars

Learn From the Experts

Sign up now for an upcoming webinar or find materials from a past session.

Learning centers

Get smart strategies for managing health conditions.

 

Arthritis

Heart Disease

Diabetes

Most Popular

Viewed

Chronically Upbeat

I Want to be Normal

Being chronically ill means adjusting to an unwelcome new reality.

We people with chronic illnesses are not normal by any standard measure, often even to ourselves. So many of us live in our heads, sometimes the only safe refuge we know. We are driven there by others, by employers and dates and even casual friends who can say wrong things, even while trying to do right.

Almost all who have lived with a serious chronic condition for an extended period know the unsettling feeling of being marginalized by the chronically healthy around us. We are all too familiar with our own limitations, keenly aware of what others can do as we watch from our seats in the bleachers, forever the spectators. Gradually and grudgingly, we grow used to our second-class status because there is no way around it.

These regular moments frequently lack drama. And invariably they are subtle. There is no smoking gun dropped at the crime scene, little evidence that there even was a crime. The sick see and understand the soft discrimination against us. These exchanges can take place in the marketplace or in schools. Frequently they take place on the social scene, even within our own families.

I want to be normal. Please let me be the same as everyone else. These are the plaintive cries of the chronically ill, who are so often pushed to the side and made to feel different. Hurt runs deep.

Sarah Levin Weiss has battled Crohn’s disease most of her life. “I’ve always had the sense that I begin every race way behind the starting line,” she says. To cope with the ailment's painful and disruptive digestive symptoms, she’s dependent on prednisone, a powerful oral steroid that has disfigured her face, stunted her growth and caused wild mood swings.

More complicated is that Sarah had an ileostomy, which means she lives every day with a bag that’s connected to her small intestine and hangs from her belly. Part of Sarah’s large intestine was badly diseased and needed to be removed. She refused the procedure for years, even as her doctors gently said it was time.

Who wants a bag, especially in a culture that pretends women do not go to the bathroom? Yet before she had the surgery, she was practically chained to a bathroom, unable to venture very far for fear of accidents.

Sarah glumly asserts that the bag is another sign of not being normal. I say back to her: It is the new normal. The ileostomy has set her free. She doesn’t bleed anymore, which was once a dangerous reality. She no longer closely orbits a bathroom.

Perhaps most important, she has carved out a life for herself that’s as close to normal as she can make it. She’s married to a man who understands her health issues and who supports her when she’s down. They are even trying to start a family.

"I am just trying to figure out what it is like not to be sick," she admits. "It has been a long time. Can you ever get past the old body image?"

What a burden to carry. Sarah has cut the prednisone and is a very pretty young woman. Her battles are not over yet, though. Maybe those of us who are chronically ill don’t feel normal because we’ve forgotten what it was like. We just forge ahead, creating our own normal. 

Emmy-winning TV producer and author Richard M. Cohen was diagnosed with multiple sclerosis in 1973. His online column is published every two weeks.

Topic Alerts

You can get weekly email alerts on the topics below. Just click “Follow.”

Manage Alerts

Processing

Please wait...

progress bar, please wait

Tell Us WhatYou Think

Please leave your comment below.

Discounts & Benefits

From companies that meet the high standards of service and quality set by AARP.

AARP membership discount Man trying on eyeglasses at optometrists smiling

Members save up to 60% on eye exams and 30% on glasses at LensCrafters.

Grandson (8-9) whispering to grandfather, close-up

Members can save 20% on hearing aids with the AARP® Hearing Care Program provided by HearUSA.

member benefits adt companion

Members save on new installation of a ADT Companion Service® personal emergency response system.

Member Benefits

Join or renew today! AARP members receive exclusive member benefits & affect social change.

Rewards for Good

Your Points Balance:

Learn More

Earn points for completing free online activities designed to enrich your life.

Find more ways to earn points

Redeem your points to save on merchandise, travel, and more.

Find more ways to redeem points