There's a whole separate reality that those with chronic illness experience. A reality that goes far beyond the smiles in a picture or being able to attend a rare gathering. Our reality can look like survival, every moment. Even in the ones where we're smiling.

The Truth Behind My Smile in Chronic Illness

I sat silent, staring intently at my phone. A tangled web of thoughts was being formed in my mind: Do I post the picture? But what will this picture say about my life? No picture tells the whole truth. And how many people are going to point out how good it is that I’m “out and about”, as if that’s all that really matters?

Nearly every time I consider sharing a picture of myself on a rare outing, I go through a long list of doubts and fears. Wondering if I can handle the potential cheers from others seeing me someplace other than my couch.

Because sometimes, I’ll be honest, I just can’t hear it. It can be painful to listen to the two second excited pop-ins, especially from the ones who show up for only these particular moments. Here to celebrate my 3 minutes of “normalcy” that were a rare part of yet another very sick day for me.

I’ve then sat and over-thought and critiqued myself for feeling so afraid to just share my moment. For feeling upset with those who truly mean well, but end up hurting me.

I’ve given myself the pep talks, reminding myself to continue bringing others into my world. To show the real me, in real moments. The me that looks mostly normal, but is actually very sick.

“So what’s the big deal anyway,” you ask?

I think in it’s most simplest terms this comes down to perception and reality. Most people see a picture of me smiling on a sandy beach with my husband and they read: “I’m feeling great today! So here I am, out adventuring like a normal person!”

What they don’t see is how long it took me to “wake up” that morning. How many hours passed before the hit-by-a-truck feeling let up enough to get dressed for the day. No one besides my husband was there to help me slowly make my way to the car so we could drive from our hotel to the beach.

I wanted to visit the sandy shore on our birthday getaway last month. Nothing felt more important to accomplish. So that’s what I set my sights and energy on. Because I had hope that there was just the right amount of everything-in-the-stars aligning for me to make it happen.

Just enough strength, the right level of pain, an inner excitement for a tiny bit of fuel. A sturdy cane and a husband to keep me from stumbling.

It took me what felt like an eternity to make my way from the parking lot, over the sand hill and down close enough to the water to let my toes take a dip. Each step painful and difficult. My breathing, labored. The sun shooting through my sunglasses, spiking my head pain higher.

And yes, it’s true: I made it. Without falling over or passing out.

But not without sacrifice.

Can we talk about the reality of chronic illness for a minute? It's hard. It just is. And yes, we will endeavor to live our life to the best of our abilities, even if that looks like a "big day" being just getting outside of the house. We might even smile and post a pic about it. But our reality never changes. We will pay for exertion. We will fight to survive every day with strength and dignity. But it's never easy, and it's never "normal" for us. Behind that smile is a war that's raging, unseen by the naked eye.

The truth? I found myself regretting all the effort of that birthday weekend days after we returned. In multiple moments you’d have found me sobbing that following week from all of the pain and symptom aftermath. It took me a week and a half to finally feel like my “baseline” was in sight, my sick normal.

And yet that picture we took sits brightly in my social media feed. To some as a beacon of hope that their friend or relative had a moment of enjoyment.

But to me it’s a picture that displays the very center of this excruciating journey. That sometimes the cost for something beautiful is far more than what we’re willing (or what should be fair) to pay.

What can also be lost in translation is that those moments for me aren’t as joyful as others view them. Like any normal person, when you’re going through something hard everything can feel tainted by that circumstance. Almost like a heavy film that is layered over our horizon.

I’m learning that it’s natural and okay for me to sit in the tension of what this reality is for me. That I can both regret and cherish that point in time. That choice I made to find enjoyment in those minutes at the beach.

Because the truth is this: no one should have to endure what I and other sick ones face for accomplishing simple tasks. Like slowly walking yourself to the edge of the shore. Or loading a dishwasher. Or getting out of the bathtub on your own.

Knowing what everyday tasks will do to us has a tendency to spin our view of the enjoyable moments when they come. Because they don’t tend to last in our world. We visit them, enjoy them, cling to the memory of them – but then the storm comes in all its fury.

And we know it. We know it’s coming. Because for many of us it always, always does.

In the end I chose to post that picture, and many others, because I’m reaching for something different. I’m reaching to cherish them for what they really are. They are part of documenting the reality of this chronic illness life. The good, the bad, the real.

It’s part of the remembering. For some day if I’m well enough to walk to the shore again without pain and without a week and a half of my body crashing like a deflated balloon? I’m going to look back at that moment.

And I will remember the beauty and the pain.
The inner strength and the frailty.
The kindness of a stranger telling me to take my sweet time up the hill. 

I’ll remember that brokenness and beauty can mysteriously survive hand-in-hand. 

Be sure to find me on Facebook and Twitter if you haven’t already! I’d love to connect. 🙂

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24 comments

  1. Matt says:

    I always enjoy reading your posts Kami, and this one is no exception. You are always so transparent with your struggles and triumphs. You inspire so many, and you inspire me to continue sharing my story. Although it’s different than yours, I feel your struggles and proud to call you a friend and fellow blogger.

    • Kami says:

      Thanks for this, Matt. I appreciate the encouragement and genuinely feel the same about your blog, podcast and posts. Keep doing what you’re doing! I’m excited about all the things you’re working on.

  2. Valerie says:

    Dear Kami,
    I always enjoy your posts. They are so genuine. You always write just what I’m thinking or have thought in my daily struggles. I can very much identify with the “perception” of photographs, especially on social media. It is hard for me to share too. Thank you for the inspiration to keep trying and keep sharing. Just… thank you! Valerie

    • Kami says:

      It means so much to me when you each reach out to say “me too!” Honestly! It’s the reminder we all need that these feelings are valid, that we aren’t the only one, and that together we can encourage each other to continue sharing our stories. Thank you for sharing, Valerie! <3 Love to you. <3

  3. Brittany W says:

    I find it so hard to balance between authenticity and wanting to maintain a positive image on social media. I want to share the pretty photos, at the beach or hanging out with friends, but I don’t want people to think that’s all my life is when I definitely have my fair share of “trapped on the couch wondering if I’ll ever be able to move again” days.

    • Kami says:

      It can feel like such a struggle to find a balance. I feel like both moments are valid and important, yet when our days are more full of the quiet, home-bound struggle it’s harder to share the brighter ones.

  4. Meredith says:

    Oh, Kami, thank you!!!

    I have been “away” from here for awhile – too ill to even read. But today I read this blog post, and I cried. I cried because just the other day I posted a picture of myself on social media from the infusion suite at my local hospital with a big smile and a thumbs-up. And so many people said, “You have such a positive attitude!” Of course that meant a lot to me in many ways, but I replied to some of those comments -lightheartedly, because no one wants anything “real” on social media except in our safe and sacred chronic illness spaces – saying that they don’t see me in my not-so-positive moments. They do not. They don’t see the days I spend sobbing as I drag myself to my storage unit to clean it out and give away all my teaching supplies because I know I will never teach again. They don’t see me on the nights when I come home, spent beyond exhaustion, and cry some more because I am alone and scared. They don’t see my reactions on the days when I find out I have yet another diagnosis – this time Lyme – and wonder when it will all stop.

    And then, like we all do, I pick myself up and go on, and try to be there for others and rely on my faith and smile and not complain. I try to balance the “I have to do this” with the “I have to sleep,” and I try to be positive. So my pictures on social media are of me smiling, but they aren’t the whole truth.

    I’ve rambled…I’m not as succinct as I once was. But thank you. Just thank you. I can’t wait until I’m well enough to read all the posts I’ve missed. 🙂

    • Kami says:

      I appreciated all you shared here, Meredith. I teared up reading of your own losses, how painful the illness life has been for you too. I am thankful we have these corners of community to come and just share openly, the reality we live with. Without having to filter, walk on eggshells or feel like we are being “too much.” Thank you for sharing, girl.
      P.S. Is Lyme a new diagnosis for you? So sorry. Email me if you ever want to chat. Here with you.

      • Meredith says:

        I love how you mentioned being “too much.” That is one of my greatest fears. Thank you so much for your reply. I guess we both touched each other with our comments! That’s why I love being here. Yes – Lyme is new, but suspected for years. I will email you sometime soon when I’m feeling better. 🙂

  5. chelsea w says:

    It’s almost sad because I just got back from a beach trip and I have yet to put up one picture to my Facebook feed. Not necessarily because I didn’t take any (although I wasn’t really out to take a lot), but for every part of this post’s reasoning. I just need to take a picture of a pile of poo since that’s how I feel most of the time! 😉

  6. Kate says:

    Thanks for articulating so clearly that thought process…and the reality!
    I’ve just returned from a few days away, and I am regretting every moment of the joyful adventures had, and I know it will awhile to return to my normal sick too!

    • Kami says:

      Oh man, you definitely get it too! It’s such a frustrating reality, wanting to enjoy those moments to the fullest but also knowing we will soon dread nearly every movement. Hoping your days can be restful and healing as you recoup, Kate. Gentle hugs to you

  7. DONNA BIRD says:

    I too can relate. I have progressive MS for 15 years and gotten Lyme disease 5 years ago. I’m in a wheelchair. I’m going for fetal stem cell treatment in October in Mexico. It’s for Lyme disease and for MS. I’m sick of being sick and sick if Dr’s not doing anything.

    • Kami says:

      Such a long struggle with illness, Donna. I’m so sorry. This sick life gets really old, very quickly. Hoping your new treatment can prove so helpful and healing for you! Having a great doc makes all the difference.

  8. Pippit says:

    Your post is so true! I think those who are not ill prefer to stay in denial when they see us enjoying something for even one second and view our lives as all or nothing and then when we get real they close their ears thinking we’re being “negative”. It leaves is betewen a rock and a hard place whether we choose to show pictures where we look happy and at peace or ravaged and agonized.

    • Kami says:

      He “negative” classification irks me, too! There’s a difference between sharing reality and complaining. But because our reality is uncomfortable it seems to be categorized that way by other people. And yes it does contribute to how much we feel safe sharing of our lives! I feel you, girl. Thanks for sharing your thoughts here! Xo

    • Kami says:

      Hi Melinda! So sorry for the late reply – I took last week off of the blog and am playing catch up. I’m so touched that this met you on a day that you needed it. These are some definite real and valid emotions that we face in this chronic illness life, no? Sending you hugs. Thanks so much for stopping by, reading and leaving a comment.

  9. Mrs. Boots says:

    I found your post in my facebook feed today, and it was just what I needed.

    Today, I am struggling to recover from an outing for my anniversary on Saturday. The crash came Sunday, and I am still trying to lose the migraine that I got as a parting gift from the activity. I can predict that I should be getting back to my normal-sick baseline tomorrow. I hope.

    Funny how we can all have different chronic illnesses, but the impact is so very similar.

    Thanks for posting this. It is lovely not to be alone — not just in the cycle of illness and struggle for normal moments — but in the thought processes that accompany the decision-making that we all have to do.

    • Kami says:

      Your description of how you pay for activity is so familiar. Yes, across so many illnesses we share this similar struggle. I’m so glad this came into your feed when you needed to hear/read it. I know how impactful that has been for me when others words have met me right when I needed them. Thankful we aren’t alone, too. Thank you for reading and commenting! (And sorry for the late reply – catching up after taking some time off the blog last week)

  10. Dear Kami – We found your post to be quite profound and as such shared on our FB page Parathyroid Peeps. Our mission is to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment of primary hyperparathyroid disease (pHPT) While pHPT is NOT technically a chronic illnesses, as surgical removal of the adenoma is the cure, the fact remains that so many of us go undiagnosed for years on end, often without any clues as to what is actually wrong, that the experiences are extremely relatable and we knew many of our followers would benefit from your reading your words . If you or your followers are interested in learning more (what’s a parathyroid???) please check our our website http://www.parathyroidpeeps.com. #checkyourbloodcalcium All our best, Barbara, Joyce and Sophie

    • Kami says:

      Hi Barbara, Joyce and Sophie!
      Thanks so much for reading and sharing my piece. I was touched to read more of your mission and pained to hear of how much pHPT patients struggle to find diagnosis. I appreciate you sharing this with the readers! So helpful to know and I hope it saves someone who reads this from fighting a long and unnecessary battle – when the cure is available. Sending you all love! Xo

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