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different types of charts and a line graph with intestines as the line

6ish Charts that Capture What it’s Like to Live with IBD

The Uncertainty of Health

When you live with IBD or any chronic condition, frequent research, and constant health vigilance become a way of life. The Internet is a tremendous resource for patients with its nearly limitless supply of information on conditions, symptoms, and treatments. However, the tidal wave of opinions online can drown any web surfer in doubt. Both online and offline, it’s difficult to manage the uncertainty of flares and remission alike. It’s easy to fall into a trap of overestimating or underestimating the severity of one’s condition. After all, the Internet is built upon connections and invites us to constantly compare ourselves to the latest trends in health.

A graph that shows hypochondria rising as number of answered questions declines when googling weird medical symptoms.

The Pleasant and the Prickly

At the top of my IBD wish-list is relief from pain, fatigue, urgency, and the other damaging symptoms that plague me. Sadly, the treatments used to reach remission can be unpleasant or slow to take effect. It takes commitment, persistence, and even bravery to sit in a room for hours with an IV in your arm every month or to take pills every morning. As a result, short-term coping strategies, though they are temporary solutions, often feel much sweeter than medically complex treatments. Simply put, I’d rather spend all morning soaking in a hot bath than stick another enema where the sun don’t shine.

Heating pads, hot baths, naps, and Netflix are all positive coping devices for IBD, whereas enemas are in the negatives.

The Waiting Game

Routine doctor appointments are an important part of managing your health journey and ensuring that your condition doesn’t spiral out of control. As a result, IBD patients tend to visit their local doctor much more frequently than the average citizen. In fact, though I’m only in my early 20s, I’d bet I know much more about colonoscopies than the average 50-year-old. Needless to say, at this point, I’m a pro at navigating through medical paperwork, lab tests, and the back hallways of my primary gastroenterology clinic. Still, though I’ve been through the standard process countless times, there are still minor inconveniences that I’ll probably never get over. One can only read a 3-month-old edition of Golf Digest and learn about the “10 Best Courses in South America” so many times before it starts to get old.

The ups and downs of excitement level when waiting at the doctor’s office, with a very short visit at the end of a long wait.

“You Don’t Look Sick”

One particularly annoying quote that almost every chronically ill individual has had uttered to them before is “you don’t look sick.” While the friends, strangers, and coworkers who drop this infamous phrase typically mean well, it often comes off the wrong way. It’s easy and natural to equate a good physical appearance with good health, but the reality is more complicated than that. Chronic, and invisible, illnesses present in a variety of ways that often have nothing to do with a person’s appearance. While an individual who is severely ill might look terrible, they just as well might look like a supermodel. It’s important to remember that looking sick, or looking healthy, is not the same as being sick or being healthy.

What people think when they say “you don’t look sick” is that good appearance means good health.
The connection between health and appearance is actually not linear and is drawn out on this graph as a line moving all over the place.

You Are Strong

Living with IBD is tough. That’s a fact. It’s a difficult, ugly, and painful disease. It’s hard not to feel hopeless and weak. Those feelings are totally valid. Living with a chronic condition means adjusting your lifestyle and making difficult decisions. However, the reality is that by fighting on both good days and bad days alike, you are proving your strength. It takes courage to deal with challenging treatments and uncertain medical outcomes. It takes confidence to own your choices and to say no when you have to cut out negative influences from your life. It takes resilience to keep taking hits from an unstoppable disease and to keep going. So know that I, an Internet stranger, am proud of you. You are strong.

With IBD, strength is high in both sickness and in health as there is much to endure regardless of remission or flare.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • thedancingcrohnie moderator
    4 weeks ago

    This is so clever. The graphs are so great! Spot on.

    Always dancing,
    Elizabeth (team member)

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