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How to Find Control When It Feels Like Your Chronic Illness Makes All the Rules

COPD Basics

May 11, 2024

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Illustration by Brittany England

Illustration by Brittany England

by Lana Barhum

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Medically Reviewed by:

Tiffany Taft, PsyD

•••••

by Lana Barhum

•••••

Medically Reviewed by:

Tiffany Taft, PsyD

•••••

Following my treatment plan, starting therapy, and learning to shift my self-talk are some of the ways I’ve found control while living with chronic illness. But it’s not always easy, and I’ve started over several times.

I was diagnosed with rheumatoid arthritis (RA) and fibromyalgia in September 2008. Before that, I didn’t know what they were or what it meant to live with a chronic illness, let alone two of them.

I used to think people living with chronic illness were in constant physical pain and couldn’t live their lives because chronic illness dictated every aspect.

But I was very wrong. And past me could’ve never imagined how incredible this journey would be.

That’s not to say that my life and experiences with chronic illness have been easy — far from it. And early on, it seemed like I had no control of my body, health, or life.

I was told I would be disabled in a few years, and I believed it. But that never happened, and despite some setbacks, I continue to work and care for my loved ones.

I don’t know what your experience is or how long you’ve lived with chronic illness. But if I could tell you one thing, you’ll always have some control even when it feels like your chronic illness makes all the rules.

You have to be willing to let go of some things and fight hard to control others.

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All the ways chronic illness makes the rules

You’re not alone in living with chronic illness. According to the Centers for Disease Control and Prevention (CDC), 6 in 10 adults in the United States have at least one chronic condition, and 4 in 10 adults have two or more.

It can quickly feel like there’s nothing easy about living with and managing a chronic illness.

There’s physical pain, fatigue, doctors’ visits, medications, treatment side effects, and lifestyle changes. It can be hard to keep up with activities, get adequate sleep, have a social life, work, and care for loved ones.

Then, there’s the profoundly personal effect that chronic illness has. It affects the bonds we share with romantic partners and other loved ones.

These changes and questions can quickly feel overwhelming, and it can start to feel like your body and your illness make all the rules.

It also causes anxiety and sadness because of what’s out of our control, including how others react to our illnesses. Chronic illness can even affect your ability to do your job or cause you to give up your career dreams.

Regardless of disease type and severity, all chronic illnesses can affect the mind and spirit. They force you to question so many things. Will you ever feel better? Will you become disabled? Do you have to quit working? Who will care for your children?

These changes and questions can quickly feel overwhelming, and it can start to feel like your body and your illness make all the rules.

I’m no stranger to the effects of chronic illness, and having lived with RA and fibromyalgia for nearly 16 years, I’ve had my share of struggles and disappointments — some related to chronic illness and others not.

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There were times when everything was tumbling

The first few years of living with chronic illness were the hardest of my life.

My marriage ended, and I became a single parent and my mother’s caregiver after she had a stroke.

I gave up my dream of going to law school, and being sick and struggling to focus at work made me appear less dependable to my employer.

My chronic illness was making all the rules, and I was losing.

To make matters worse, I was living with severe pain and fatigue. Four years into living with two chronic illnesses, I became severely depressed.

All these changes really left me wondering whether there was any point in trying to live my best life. Setting goals and ambitions, or simply feeling happy, felt miles away.

My chronic illness was making all the rules, and I was losing.

How I regained control when my chronic illness made all the rules

I somehow survived those first years. I wish I could tell you it was easy or there was some magic solution that helped, but I can’t. I just focused on trying to look after myself, care for my loved ones, and find joy despite some of the most challenging moments of my life.

When it came to my physical health, I had to be willing to make changes to my diet and keep moving. I followed my treatment plan religiously and reached out to my doctor when my medications weren’t helping or stopped working.

Despite some setbacks with my health and the snowball effect on my personal and professional life early on, things started looking up once I stopped dwelling on what could’ve been.

Chronic illness brought much sadness and anger to my life — for a short time, at least. The single most positive thing I did for myself was to get therapy. With the help of a mental health professional, I learned to cope better with chronic illness and the obstacles life threw my way after my diagnosis.

Despite some setbacks with my health and the snowball effect on my personal and professional life early on, things started looking up once I stopped dwelling on what could’ve been.

I took care of my mother until she passed away in 2016, raised my children alone, got a master’s degree, left a stressful job for a much less stressful one, started writing about chronic illness, and found love again.

It all sounds so simple when I sum it up in one sentence, but it truly was a one-step-at-a-time scenario that took many years.

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I still have my moments when it feels like chronic illness is winning

Being someone who thrives on controlling every aspect of my life, I never imagined there would be times when my chronic illness made the rules. And to this day, my health keeps changing, and if anything, it’s gotten worse over the years.

But even in those most difficult moments, I relied on one of the most valuable tools I learned during therapy: shifting my self-talk.

About 6 months ago, my medications seemed to stop working. I was dealing with severe pain and fatigue. Walking became extremely painful, and I needed a cane to help me get around. I reached out to my doctor, who changed my treatment plan. It took some time, but my symptoms became manageable once again.

For many months, the physical pain was so bad that, at times, I’d cry, and there were many moments when I felt very sorry for myself. Every time this happens, it feels like I’ve lost control again.

But even in those most difficult moments, I relied on one of the most valuable tools I learned during therapy: shifting my self-talk.

Shifting your self-talk means being aware of what you tell yourself and choosing kinder words over harsh ones. Choose to speak to yourself like you would your best friend. Be kind, gentle, and encouraging. Accept and forgive yourself.

If you do this often, you’ll find it comes more naturally on the days when your chronic illness seems to be running the show.

Learning that control is a give-and-take

Of course, you can’t control everything, especially when it feels like your chronic illness is making all the rules. But at some point, you have to figure out what’s in your control and how you can improve your situation.

Even after you feel you have control of your illness and your life, things will change again. Treatments will stop working, pain and symptoms will come back, and it can feel like you’re back to where you started. But remember that each hardship teaches you new resilience and tactics.

Take the time to feel what you need to feel, but make sure this isn’t forever. Setbacks are part of this experience, and you can always start over again. Tomorrow is a brand-new day.

Medically reviewed on May 11, 2024

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About the author

Lana Barhum

Lana Barhum has been a freelance medical writer since 2009. But she has been writing since she was old enough to create stories, and now, 30-plus years later, she is still using written words to express herself and help others navigate life with chronic health conditions. Having lived with rheumatoid arthritis and fibromyalgia since 2008, she has used her own experiences to share expert advice on living successfully with chronic disease and provide answers about various health conditions.

Lana holds a master’s degree in legal studies and a bachelor’s in business administration and has worked for more than 20 years in the legal field. She has worked in a variety of legal settings where healthcare knowledge was a necessary part of the job and uses her background and experiences to educate others on chronic health conditions and various aspects of healthcare. Find her on her website and LinkedIn.

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