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What Healing From Complex Chronic Illness Means to Me

The scary, vulnerable truth of healing as I've known it and experienced it

Katie Dienes, BSN, RN

I’ve been really feeling some type of way these past few weeks, so I figured I’d switch it up a bit from my typical posts today.

I’ve had a lot on my mind and a lot building up as I’ve started my transition off of many medications. They’ve become a part of my existence, and honestly as much as I hate to admit it: they've been a comforting crutch. Starting to let go of what's been such a huge part of my life for so long has really shaken something up in me.

Healing is one hell of a roller coaster, with its twists and turns, ups and downs, highs and lows, and everything in between. As I venture on through what I’ve fondly referred to as my healing journey, my definition of what true healing is has evolved over time.

For SO long, I was longing to find people who "got it". Not just got it, but REALLY got it. But what I'd find instead was that either people didn’t get it at all because they couldn’t relate to the experience of living with complex chronic illness, or they could relate to an extent but it just wasn’t the same…

I kept finding myself stuck between 2 tribes in the chronic illness community:

Those who were picture-perfectly healed already, eons past where I was at


Those who loved to wallow in the foreverness of being doomed as a victim of sickness.

I owe tremendous gratitude to both camps, because its forced me to try and step into my own and really find my own voice in all of this. You see, in my experience I’ve always found myself as a bit of an outcast, an outsider who doesn’t fit neatly into either one of these subgroups.

I’ve never been the type to view my illness as a life sentence, and I don’t say that to knock anyone that does. But for me in my experience, I choose to see it differently. There is always a light that can shine through in even the darkest of circumstances. If I succumb to chronic illness and let its “shittiness” consume me (because let’s be honest, it can be downright shitty sometimes), then what really do I have left to live for?

Then there’s the other extreme, pretty much the total and utter opposite, where you see that the healing has already happened. Images of picturesque lives full of the bliss and the glory of having made it out of the trenches to the other side.

But that just isn't me either...

For me what I’m finding is that I lie somewhere in the middle, and I’m finally learning what my true definition is. I’ve been so fixated on the journey as a means to an end, desperately wishing to come out on the other side whole again. I’ve seen so many amazingly inspiring women do just that on social media, leaving their illness in the dust as nothing more than a former moment in time. So why in the world hasn’t that been me yet? I still have pain, I'm still fatigued, I still live at doctor's offices, and I still haven't "healed" yet.

Yet at the same time, as I come off of these medications and move towards a new future, the prospect of getting better somehow scares the sh*t out of me. Maybe its the thought of letting go of my former self, or the pressure of feeling like a total and utter failure if I relapse (Because truthfully, between you and me, its been very challenging on my body trying to back off of medication. I expected it to be a breeze somehow, but I'm silently struggling.).

It’s not a means to an end though, and I’ve had it all wrong. No matter what my "final" outcomes looks like I'll be Katie regardless. What I’m finally seeing is that healing IS the journey. It’s all about the journey. It is not some destination that we hope to one day jump off at, traveling along aimlessly until we finally reach our stop. Time to get off the train now!

Healing is a process and a beautiful adventure, and although I'm not someone who chooses to identify as being "chronically ill", I don’t know that I’ll ever be perfectly “normal” again. With that picture-perfect life and a body fully equipped to take on the world full speed ahead, because the reality is that chronic illness changes you. My new, perfect life is what I’d been longing for and have been desperately waiting to achieve. But I’m now able to embrace this crazy, twisted journey for what it truly means. It's like my rose colored glasses are finally lifting.

Healing is always possible, that much I firmly believe in, but what I’m finally realizing is that healing is never really “complete”. To me, the point of healing is to keep growing and evolving, taking whatever life throws your way and learning to thrive from it.

Now what this DOESN’T mean is pretending that things don’t suck sometimes, because let’s be honest: sometimes things just downright suck. But the key to true healing, in my humble opinion, is to feel it then dig deep to move beyond it. Feel the pain, feel the hurt, feel the sorrow, feel the pity, but to heal is to pick yourself up again. Writing these thoughts is my version of doing just that. It's scary, but I've desperately needed this. If you want to see something that's easily 100x's scarier for me, feel free to check this out.

I agonized over whether or not to share this video, but here I am finally taking the leap.

I am grateful for having experienced illness, because without it I would never know true wellness. It's been such a blessing, and I wouldn’t change this journey for anything. No matter what my ultimate outcome looks like, I am so much more than a chronically ill person. I'm now able to see myself as someone who is basking in a state of chronic wellness despite being dealt a different hand in life.

If you’re still here with me reading, thank you.

And if you’re struggling: I see you. I feel you.

Remember something that I myself had forgotten along the way somehow: social media is deceiving, it doesn’t paint the full picture. As perfect (or miserable) as someone may seem or display their life to be, we all have our own struggles and battles that we’re facing everyday.

I’ve felt alone for so long in this experience, but I know there’s someone out there listening. Resonating deeply and hearing every word I’m saying as if its your own.

And I look forward to meeting you some day <3

Until that time,



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