Chronic Illness Identity Theft: Grieving the ‘Old Me’ in a Search for Inner Peace

Chronic illness swept into my life several years ago, only to steal the one person I knew best—myself. While I’ve always experienced a variety of symptoms, new ones seemed to pop up daily. Before I knew it, three symptoms turned into six and six into 10. 

Every day I wake up with pain.

When it’s at a “lower setting,” it’s a dull aching. When it’s more intense, it’s like an alarm is going off throughout my entire body—an alarm that cannot be ignored. It’s like I’m on fire, yet no one else can see the flames. 

A normal day for me is set somewhere between medium and high pain levels. Unfortunately, the aches and pains never fully turn off. Some days may be absolutely unbearable, while others are just OK, but the pain is always there, no matter what.

When I wake up in the morning, my bones and joints ache all over. My joints audibly crack and my body feels as though someone has beaten me with a baseball bat throughout the night. I feel bruised and broken.

No matter how much sleep I get I’m always exhausted.

I can’t recall the last time I woke up feeling well-rested. Those words mean nothing to me anymore. A good night’s sleep for me is a night where I can sleep for more than two hours straight without having to get up because of my bladder alarm (AKA my not so dear friend Interstitial Cystitis).

Though I live in this body every day (and I’m trying my best), I don’t know that I’ll ever fully get used to it. Sometimes, I dream about waking up and feeling “normal” again. I could deal with the flare-ups in the past, but now it’s as though I’m living a life of what feels like a constant flare-mode—a battle I wasn’t quite prepared for.

There was a time in my life when the phrase “chronic pain” was foreign to me. In fact, I couldn’t imagine what that meant for someone. I don’t think anyone can unless they live with it themselves. It’s simply unfathomable to those who don’t suffer.

I used to battle my body in every sense of the word, and honestly, some days I still do.

I’m slowly learning how to come to terms with my condition and this new way of life. I’ve accepted the fact that my chronic illness isn’t going anywhere. This has been the hardest part to swallow. Though my separate illnesses have changed my life completely, I’ve formed a slight sense of acceptance so that I can live a better life.

Mentally battling your body every day is utterly exhausting.

I’m trying to be understanding and to show empathy towards myself, as I do so easily to others who suffer from chronic pain, trauma, etc. Even so, I’ve always been hard on myself—striving for perfection in every way.

I often struggle with the feeling that I am a shell of the woman who once was—the independent spirit who lived and traveled all over the country. The woman who magically manifested what she wanted and just made it work.

I once sold everything I owned and drove to live in the middle of nowhere with my dog to work at the largest animal sanctuary in the United States. (It’s my proudest accomplishment in life to date.) I used to be able to do whatever I wanted (within monetary means) and eat whatever I wanted without having to pay for it with a hospital trip.

It’s crazy to think about how much I’ve been forced to change, thanks to this disease.

Usually, people change because something drives them to or because they want to. I wasn’t given a say. I’m no longer fun on road trips as all-over chronic body pain, Endometriosis, and Interstitial Cystitis now ruin the experience for me.

I can’t go hiking anymore because I have very little energy and it causes major pain flares. Sometimes, I look back at my life and wonder just how I did it all. As grateful as I am that I’ve had some wonderful adventures, I often can’t help but grieve them too.

Living with chronic illness forces you to learn how to love yourself—what else could I do with all of this unvoluntary alone time? Thankfully, I’m slowly learning how to love myself. It’s sad to think that at the age of 33, I never truly have.

To be honest, I hated myself for getting sick. I hated the fact that I was unable to get better. Though I now realize this is out of my control, learning to let go and accept it has brought peace and a bit of mental clarity into my life.

Accepting your chronic illness doesn’t mean that you’re giving up.

Accepting your illness means choosing to acknowledge it exists. It’s learning to co-exist with the pain without letting it ruin your sense of well-being and self-worth. Living with a chronic illness has humbled me. Though I may feel like the shell of the person I once was, it’s given me the chance to reinvent myself.

Within the past five years, I’ve left three careers that I absolutely loved. I was forced to apply for disability—something that I never wanted to do. Even so, I’m not one who likes to just sit around. I’ve found other ways to occupy my time so that I don’t completely lose my mind.

Going to doctor’s appointments, physical therapy, and the grocery store only brings so much excitement into my life. So I’ve started writing again, making jewelry, drawing, playing the keyboard, singing, reading (more), meditating, and exercising within my limits. Though these hobbies don’t necessarily compare to the joy and confidence that past careers provided me with, my hope is that someday they will.

These hobbies have helped me feel like I have worth—piddling has helped me stay sane. While I may not be able to work with animals or special needs students anymore, I am slowly finding my way back to living a life where I can still feel joy. 

There’s no doubt that physical pain affects your mental health—even more so if you have a history of mental health issues. Depression and anxiety go hand in hand with chronic pain. Let’s face it, none of us want to (or chose) to live this way.

Chronic illness has the ability to consume you—it’s incredibly depressing.

That’s why it’s imperative to treat yourself with the utmost respect and kindness. Others may not understand what you’re battling, but the more understanding you are to yourself, the better. Instead of beating yourself up for the things you can no longer do, think about what you can and will do. This new, positive way of thinking really makes a difference. Trust me. 

Let go and learn how to live, again. 

You have to let go of the past or it will break you. I’ve struggled with letting go as I was once a very active person. I based my self-worth on the careers I held and how much of a difference I could make in the lives of others. Now it’s my turn to help myself. (To whoever is reading this: If my words resonate with you at all, perhaps this will help you too.)

Living with chronic illness gives you the chance to reinvent yourself.

Grieve the “old you,” but don’t wallow in sorrow and live there. Sure, there will be days when this is easier said than done. Please know that it’s OK.

Be easy on yourself and know that it’s OK to have feelings. We’re always growing—we’re all a work in progress. Living with a chronic illness is a difficult path, so give yourself the credit you deserve.