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3 Things to Remember in the ‘New Normal’ With Chronic Illness

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I can pinpoint the exact day when I first recognized the symptoms. I had just returned home from a trip, and I thought I must have been feeling the effects of a busy weekend, a lingering cold, and an incredibly stressful semester. It wasn’t a surprise that I woke up the next morning feeling unusually exhausted and in pain. My schedule had been intense and I pushed myself. Surely I’d bounce back after a few days of rest, I thought.

I didn’t realize that was day one of the new normal.

A few days turned into a few weeks, which turned into a few months and an endless string of doctor’s appointments as each one investigated their area of expertise to rule out a long list of things they needed to consider. The list only grew longer as the results slowly came back one by one and confused my doctors even more, extending the process for over a year. Not knowing was the worst part. Is it something treatable? Will it ever go away? Could it get worse? Is there anything I can do to help myself feel better? What if they never really find what’s wrong with me?

Sometimes the label of “chronic illness” or “disability” happens in a specific moment where the doctor walks into the room and tells you the test results finally uncovered the culprit for your symptoms. Sometimes it’s a label you adopt over time, when the hope of finding answers fades into the realization that no one really knows what’s going on, and there may not be anything you can do to make it go away. It can happen months or years down the road, as you learn how to navigate the new normal.

Life changes when people get sick. The things you thought were important begin to take on new meaning. Your time is divided in a thousand more directions. You see the world a little differently, and you notice things you never did before. Your priorities shift. You might spend about as much time Googling medical terms as you do on social media. You modify the standard of what it means to have a “good” day. Your doctor goes on speed dial, and you make friends with the nurses. Your life begins to revolve around medical appointments and managing your limits, instead of coffee dates and social events.

This is the new normal.

And it’s hard. You’re thrown into a world you might have never saw coming. There are things to learn and adjustments to make. But the new normal doesn’t have to be bad. I’ve found three things I believe are helpful to remember in navigating this new way of life.

1. It’s OK to be upset.

Whether a chronic illness is diagnosed or undiagnosed, the result can be the same: there’s now something indefinitely a part of your life that will require some changes. It can be challenging. It can be scary. It might not seem fair. When you begin to feel the stark contrast between your life before and after your chronic illness, it’s OK to be upset. Acknowledging how you feel is an important part of moving forward. Taking a little time for yourself, to be sad or mad, can be helpful. Once we have, we also must know we’re not alone in this. You may not be able to control how your body feels physically, but you are still in control of how you react to this new adventure. Life can still be great. The new normal doesn’t have to mean the end of your dreams, goals and hopes. It’s one more layer to your story.

2. It’s good to be proactive.

Take charge of your own health. Do research. If you have a diagnosis, learn everything you can about it. If you don’t, find a doctor who’s willing to thoroughly investigate all the possibilities and talk through all your concerns and questions. Don’t be afraid to fire a doctor or stand up for yourself if you’re not getting the help you need. Find out what has helped other people who are dealing with the same issues, and keep in mind different things work for different people. Think outside the box. The treatments provided by modern medicine may be necessary and incredibly beneficial, but they’re still only one part of overall health. Make sure your body is receiving proper nutrition. Take the time to exercise your body in ways you are able to do. Pay attention to your emotional health, and give yourself space to process everything.

3. It’s essential to be yourself.

Having a chronic illness doesn’t necessarily change who you are. It just causes you to do life a little differently than you did before. It’s important to follow the doctor’s orders and commit to making the necessary changes so you can care for your health and live a full life. But it’s equally important not to lose yourself in the process. Caring for your health doesn’t equal “being healthy,” and a full life isn’t tied to how active you are. It’s about paying attention to your whole self. What do you like to do? Who do you like to hang out with and what kind of activities did you do together? What are your interests and what are the commitments that are most important to you? Find a way to do those things. It may seem like your priorities are in constant conflict with the gentleness you need to give your body. It may mean you have to constantly shuffle those priorities so you can take care of every aspect of yourself. It may require making a few adjustments or trying some new things. But it can be possible.

If you’ve found yourself in the midst of this new normal, I want to welcome you to the club. It can be hard, but we are a community. We are learning just how strong we really are, and we don’t back down. It’s challenging and things are complicated, but life is still beautiful — maybe even more beautiful — in the new normal.

Follow this journey on Letting Go of Why.

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