How to Define Your New Normal When You’re Chronically Ill

Has anyone told you that you’ll find your “new normal”? I remember thinking about my own “new normal” way back in 2006. I had completed a hell of a long course of treatment for non-Hodgkin’s lymphoma and was in what I like to call the “now what?” phase. The treatment was over. Now what?

Aside from my fragile new immune system, thanks to the stem cell transplant that saved my life, I was physically doing pretty well. Emotionally, not so much.

I knew my life was going to be different. I didn’t have the energy I had before and I understood that I could relapse or develop a new cancer. As if that weren’t bad enough, chemotherapy had shoved me into instant menopause.

I felt lost. Abandoned by my previously healthy body. And I was consumed with anxiety and feelings of somehow having let my family and myself down. Mostly I felt like a liability. Like an accident waiting to happen.

That was 14 years ago, but I felt all of those emotions again in 2018. That’s when I was diagnosed with myositis, a rare autoimmune disease that affects my muscles and my pulmonary function.

Five steps to define your “new normal”

My new normal would have to be redefined. But I looked at it completely differently this time because I realized why I hated those words so much: they implied surrender. And I would not surrender or be defeated, damn it.

When we hear about finding a new normal, we interpret it to mean that that the life we’ve become accustomed to living will change and evolve into a different life and that we’ll grow to accept those changes and find a new way of living to settle into.

Fair enough. But the truth is that we are all changing and evolving all of the time. Because that’s how life works – no matter what our measure of health is.

The difference is that those of us who are chronically ill are often faced with more immediate or dramatic change. But I’ve learned that this is our best opportunity to redefine our lives, to define a new normal instead of lapsing into one without forethought.

How do you define your new normal?

1. Give yourself some time

I’m guessing you’ve had moments when you’ve acknowledged that the life you’re living isn’t the one you thought it would be. I sure have.

The physical and emotional effects of living with chronic illness force us to rethink how we live.

Chronic illness robs us of our physical health and our energy and it threatens our emotional well-being, too. So much so that we often ignore or push away the chronic grief that rides shotgun with our chronic disease.

It’s okay to grieve. It’s necessary to grieve. You can’t heal or move forward until you do. So allow yourself the time to mourn what you’ve lost. You have to name the emotions in order to deal with them.

2. Do some emotional housekeeping

We know how much better we feel when we get rid of clutter. Cleaning out a closet can be therapeutic. It gives us an opportunity to take inventory of what we have, to examine each individual item more closely. So we’re faced with evaluating whether or not it serves us anymore.

It’s important to face our mental “clutter” too! Ask yourself some hard questions. What assumptions are you holding onto about what your life “should” look like? What thoughts do you have that are intrusive and that don’t serve you well in some way? Is there something you’d like that’s within reach that you can work toward?

Spend some quality time with yourself. Do some digging in your emotional closet and make space for what you really want and need.

3. Pay attention to what you’re doing

The physical and mental fatigue that accompany chronic illness force us to make choices about how we’re going to spend our energy. I’ve learned that if I spend the better part of a day cleaning the house I’ll be completely exhausted the next day.

And when I’m completely exhausted I’ll fall into a bad habit – too much news (which has been primarily bad news for nearly six months). It doesn’t fix the exhaustion. It just compounds it with depression – over something I can’t control anyway.

So when I say pay attention to what you’re doing, I mean it literally. What are your habits? We all fall into habits – too much screen time, too much worry, too much self-blame, too little physical activity – and not enough fun!

You can define your new normal if you make conscious choices about how to spend your time and energy

What does your daily routine look like? Do you get enough rest? Are you sleeping well? How do you feel physically? Do you try to eat healthy?

Are you making time for activities that you enjoy? Do you take the time to connect with friends and family?

Keep track of your habits for a week or so. Write them down. Then take a critical look at how you’re spending your time and how you’re feeling – physically and emotionally.

4. To define your new normal you have to test your limits

There are many types of chronic illness, and each of them imposes some sort of limitation, physical or emotional (often times, both). The autoimmune disease that I have has left me with muscle weakness, limited lung function and fatigue.

Sometimes I avoid pushing through the weakness or the fatigue because it’s a reminder of what I’ve lost, of the fact that I can’t accomplish some fairly simple things that most people would take for granted. There was a stretch of time where I couldn’t walk up the stairs without using the handrail for leverage and support. I couldn’t lift a basket of laundry.

But I’ve learned that I need to try, even if I try in a modified way. Because progress – no matter how small – is still progress. We can be honest with ourselves about our limitations and still push safely at the boundaries. You won’t know your limits until you test them.

5. Be willing to adapt

If you’ve been living with chronic illness for a while, you know how unpredictable it can be. But the good news is that you’re accustomed to uncertainty. You’ve had to adapt all along. If you choose to adapt in a way that is intentional, you can redefine what your life looks like – on your terms. That’s what it means to define your new normal.

In his book Life, the Truth, and Being Free, author and motivational speaker Steve Mariboli says it best:

“Incredible change happens in your life when you decide to take control of what you do have power over instead of craving control over what you don’t.”