People say that as a young adult, we should be living in the moment: not having a care in the world, taking advantage of any opportunity that pops up, acting spontaneously.

This all sounds like fun, until the idea is no longer a suggestion but an imposed requirement.

But not knowing what tomorrow brings, and being forced to live in the moment, are extremely scary things to deal with when we have chronic illness. For someone who is a planner, I have been obligated to take my life one day at a time more often than I appreciate. Having Crohn’s Disease, I have learned the hard way that chronic illness is unruly and unpredictable by nature. 

Periods of remission are followed by unannounced and rapidly worsening periods of active disease, which have the ability to flip my world upside down in the blink of an eye. One day I may be perfectly fine, exercising, attending class, doing everyday things. The next day my symptoms could develop into what is the beginning of a flare-up of my disease. This sure doesn’t sound like what people are talking about when they say to live in the moment.

Just like any aspect of a chronic disease, the capriciousness of illness requires some getting used to. Not having answers to important questions, like: “Will I be able to go to work next week?” or “Should I cancel my vacation next month because I am flaring?” or “How long will this medication take to alleviate my symptoms?”

My doctor does not know why I failed to respond to the majority of medications used to treat Crohn’s Disease, why my symptoms keep recurring with worsening severity, or how long I will have to wait in anxious anticipation of my next flare. I do not know what my life will be like in a week, month or a year from now. There are so many unknown variables that factor into disease, and in most situations, nobody holds an answer.

This is a difficult concept to accept. Everyone wants to have a life where they feel like they are in control, but sometimes, chronic illness is in charge.

For times when we are forced to take a backseat to our disease and live our life day-by-day, here are some helpful reminders:

Stay calm: Stress is often a component of illness, whether direct or indirect. There is no sense in worrying about something out of your control. Instead, focus on what you can control and let the rest fall into place on its own.

Appreciate your health at its prime: When you are in a bad period of active disease, it is challenging to remember what life is like when you are feeling healthy. Although easier said than done, try to remember the activities that make you happy when you are in remission. When that time comes again, be thankful for the days when you feel your best.

Make short-term goals: You may not be able to plan a trip to the mall or a dinner date with your friends for next week, but how about focusing on something more attainable? Make a list of small things you can accomplish to boost your mood. If you have been cooped up in the house, set a goal to take your dogs for a short walk or spend time outside. If you have been too ill to wear anything but pajamas, celebrate the day when you have enough energy to get dressed. Any accomplishment is a successful accomplishment, if it is meaningful to you.

Have goals with a flexible deadline: If you know you want to get back to exercising or attending classes/work after a surgery, don’t rush yourself or self-impose a timeline. Instead, keep in mind that your goal will be met if you set your mind to it, regardless of the exact day it happens. If you know you want to travel the world, but don’t think your current health status will allow for it, you can still aspire to achieve that goal. Australia will still be Australia 5 or 10 years from now.

Always carry a backup plan: Don’t get discouraged when things do not go as planned. With the unpredictability of chronic illness, it is hard to know what the future has in store. That being said, it isn’t a bad idea to have a contingency plan in case your original intentions are denied.

Be patient: Being sick requires a lot of waiting. Waiting for test results, doctor’s phone calls, medications to work, your flare-up to subside—the list goes on. When you realize you cannot rush something, remember to be patient. Time heals.
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Author: Amanda Elizabeth

Editors: Ashleigh Hitchcock; Yoli Ramazzina