Invisible illness. Guilt. Community. Positivity.

I know what you're thinking...the concepts are hardly synonymous. In fact, at particular points along this journey, I will readily admit I have struggled with accepting that some of these things can even coexist.

I'm hardly a professional when it comes to sustainable mental health, positive energy, or even relative emotional stability (let's be real)...but I've certainly learned a thing or two the past 7+ years and I'm not sure I would have learned those things had I not been diagnosed with rheumatoid arthritis (and 6 co-morbidities).

I've found that it's important to think deeply about the things that bring hope and make me look forward to tomorrow despite the inevitable pain and grief that will be there as a result of living with chronic, invisible illness. It's also important to remember there is professional help outside of our immediate circles of influence; and it is equally (if not MORE) important to talk with our doctors about both mental and emotional health.

INVISIBLE ILLNESS

I risk sounding cliché here, but it is imperative to note that absolutely every single one of us copes with stress and fear differently. Even the stress and fear experienced by two people with the same autoimmune diagnosis differ significantly. However, I would be willing to venture a guess that the invisible element to these chronic conditions affect most of us in a similar manner. The exhaustion that comes from constantly feeling the need to justify and explain or risk being invalidated and/or judged heavily sadly affects everything we do. Invisibility *almost* never, ever feels "good" or validating.

Don't get me wrong, there is a certain feeling of empowerment and even one of gratefulness that comes with/from being able to cover up my scars and swollen joints with clothing. However, that "hidden blessing" can just as well be a curse. A life marked by a chronic condition (or several) already leaves many of us in a constant state of limbo. One hour can feel well-managed and triumphant and the next you can find yourself in a puddle of tears grieving the thought of a life you might have had. It's a scary place to find yourself as there is no predictability living in a body that deceives and attacks itself daily.

I try to keep a healthy list of things (an actual, tangible list sometimes...but a list in my mind, mostly) that have helped me through difficult, painful seasons in the past. Some of the most tried-and-true techniques I've found include:

• Using a meditation app such as "Buddhify" or "Headspace"
• Calling, texting, or otherwise messaging one of my  pals.
• Putting my energy and focus to work on a specific project. Lately, that energy/focus has been put towards my journey to getting a service dog!
• Scheduling an appointment with my mental health professional to talk about and employ other coping mechanisms, such as progressive muscle relaxation, "leaves on a stream," etc.

Now, if I'm being honest, not even an ounce of me feels like seeking positivity or practicing healthy coping strategies, particularly right now. My body has been flaring for several weeks and as I continue to wait to begin a new medication, I have found myself spending majority of my time curled up in bed with ice packs, heating pads, pain medication, and ginger-ale trying to block out the internal, invisible pain. And, well, the guilt that comes along with all I've written thus far makes me wonder if what I've done or continue to do just to keep my head above the water is "enough."

GUILT

I've found that the most pressing guilt I feel and am constantly trying to break free from stems from the very simple but detrimental thought that I could be or should be doing MORE when I am doing ENOUGH. If I have a couple hours between classes or my next appointment, the reality is that I will (more often than not) choose to take a nap rather than do the laundry. If I was in the emergency room for hours the night before trying to get pain under control, the reality is that I will (more often than not) choose to skip class the next day and force myself to rest.

Yet, even though I can straightforwardly present those two recent, real examples in writing and refrain from typing the words because...or let me tell you why...I still find myself fighting the voice of guilt in my head. The voice that says "Kenzie, people have it worse" or "Kenzie, this reveals just how much of a burden you really are..."

There is immense power in recognizing that, but mere recognition does not change thought processes or eventual outcomes. Personally, I've found that expressing the guilt I feel with a trustworthy member of my support system often relieves some of my incessant search for that sort of validation. Giving yourself grace in it all is important, too. The repeating of simple "observation" mantras such as...

• I was particularly anxious today, but that doesn't mean I'll feel the same way tomorrow. 
• I am doing my part in this treatment process; that's all I can do.
• My pain is real and my feelings about that pain are real...and those things don't need validation.
• A good day is good day...and a bad day is a good story! 

...has helped me immensely in terms of intervening with these unproductive thoughts. :)

COMMUNITY

Because I've been struggling myself, I decided to reach out to the beloved  Twitter community for ideas. The raw, visceral responses to a tweet in need of suggestions is just one of the reasons I believe in online community more than I believe in just about anything else. My kindred spirits are people hundreds (sometimes thousands) of miles away, but we are able to reach each other in ways that no one else can.

What keeps u hopeful...positive...tenacious...while living ? Feeling more hopeless than ever this week & am open to suggestions

— Kenzie ()

I try to focus on the good things coming up. Like eventually my new meds will kick in, I have an appt tomorrow, etc.

— Caitlin ()

Naps. Writing. Texting faraway friends. Cats 😸

— Derek & Chelsea ()

Wish I had advice. All I have for you is hugs.

— Aubrey Anne ()

find the little wins and celebrate, get out of bed👏, shower 👏👏, put on PJ's👏👏👏, real clothes👏👏👏👏! 😜

— Preston ()

holding on for the "good"/better days

— Rosie ()

I have people that depend on me even if I don't work they need me here. I focus on them while doing the best loving I can.

— DynamicDiana ()

There are very few things more powerful than a community of people who speak unabashed truth + fierce encouragement. I have been fortunate enough to find a safe place within these communities on , , and with some of my favorite folks at Joint Decisions. I will be forever grateful for that honor and the empowerment it has brought me. I strongly, strongly encourage all patients to seek out and engage in these communities as they foster an environment of connectedness and vulnerability through the sharing of one's personal story.

POSITIVITY

I think it's both fair and safe to say that even following the specific suggestions set forth here and practicing a variety of other healthy habits won't completely take away the sheer reality of what it is to live a life filled with continuous, constant, chronic pain. 

Nonetheless, throughout the seasons where and when we are reminded just how all-encompassing our pain can be, I think the best thing we can do for ourselves is remember the often somber but universal truths that get us out of bed in the morning; ready and willing to fight for another day. That, to me, is true positivity. Seeing each day as an opportunity to try.

I have known no other humans with as much determination, gumption, and strength as those in this community. Most days, it really can and does feel like drowning. That's the truth. Every day, though, I am reminded it is absolutely possible to learn how to swim. 

"We cannot save anyone; we can only offer ourselves as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer a paralyzing pain but a mobilizing one, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope." -Henri Nouwen

This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own and should NOT be taken as medical advice.

Check out Joint Decisions on  and !

Among the many blessings that God has given me in my time at Bethel University thus far is a beautiful, beautiful friend named Julia. She is joyful and energetic and motivated. Above all, she holds me accountable. I have mentioned her in posts before and this certainly won't be the last you hear of her. She is someone who, though at times, cannot understand me...desperately wants to. She finds the greatest joy in genuinely pursuing relationships with others.

Before Thanksgiving, I received the startling/unexpected results of my MRI's, went home almost every weekend to attend multiple appointments, and got the news about my upcoming surgeries. Each and every day felt like another excruciating punch to the stomach and each and every night consisted of me worrying about things completely out of my control. I didn't beg God to change the circumstances and I didn't go to any length to change them myself -- instead? I internalized. Though I wore a smile on the outside and answered the dreaded, "how are you?" question with a entirely fabricated, "I'm fine!" I was growing weary. During this time, Julia, my roommate Maddie, my friends Carrie and Paige, and my best friend Amy all the way in Missouri made it (what seemed like) their own personal mission to make sure they kept me lively. Whether it was a hug, an encouraging note/message, or a funny story...they were there, day in and day out.

Sometime after Thanksgiving, my friend Julia came flying into my room as she always so energetically does. In her hand, she held a small black bracelet that read: "positivity." 

"For you!" she said amongst a spell of her infectious laughter, "and every time you have a negative thought, you have to snap your wrist with it!" She settled it on my arm. I laughed it off and thought I'd forget about it...oh, how wrong I was.



Throughout the weeks that followed, the bracelet served as a deep reminder of the power that positivity has in any and every situation. I have worn it every day, and, yes, I've had to snap my wrist a few times. ;) By God's grace and strength, I was able to complete my finals, pack my things for a long break home, and still enjoy the remainder of my first semester surrounded by girls who so fiercely love and support me.

Now, am I saying a bracelet magically combated all of my negative thinking? No, not at all. In fact, where I am now has a lot more to do with what God spoke to me through the gift of friendship than it has to do with a mere elastic band around my wrist. But what I am saying is this: though things have been trying -- though things on this earth will ALWAYS be trying -- I have been personally reminded of what JOY we have in our Savior no matter what the circumstance may be...no matter how the pain may feel...no matter how weary we may become.

I have been severely nauseous since my surgeries. Most days since? I haven't even gotten out of bed. I refuse to take my pain medications anymore as they make the nausea even worse. The pain and uncomfortableness at night makes the nausea worst. A simple shower leaves me in need of a two hour nap. Many days, my mom starts making a meal I requested and I have to make a crutched run to the bathroom because I can hardly stomach the smell. Each day is a battle and all I can do is keep waking up and going to war...with my own body. While it is exhausting, I understand it is also essential. 

Yesterday morning, my best friend Amy and her family picked me up for church. Before I even got in the car, I didn't think I would make it through. I miserably sat through the service deliberating with myself over whether I should make a crutched limp to the bathroom or whether I should just stay seated and hope that I could hold it together for the remainder of the service. I decided to stay.

It's always amazing and glorious and bit a funny to me when God shows up like that. A divine appointment, some might call it. I decided to stay, and I'm thankful I did because the message reminded me of the power of positivity, something so important, yet again. As I bowed my head to pray, my gaze fell upon that black elastic band around my wrist...and I was reminded of another powerful truth. You see, whether we find ourselves in a season of illness, joy, grief, peace, or something entirely different...HE is with us -- WITHIN us, even, and He is worthy of our praise. 

Psalm 94:19 says: "When the cares of my heart are many, Your consolations cheer my soul." I can't think of a better reason than that to remain positive throughout this difficult season though, at times, it seems entirely impossible. He is with me and I have decided to stay -- and whether staying means battling, celebrating, enduring, or rejoicing (and at times, all of those things)...I will do so for He is within me and I will not fall.

one || Our period is the perfect excuse to indulge in things like chocolate, coffee, chocolate, ice cream, chocolate, and cookie dough. Oh, and chocolate.

two ||We can change our hair color as often as we change our underwear. Or something like that. Word.

three || Pedicures. I think I would die if I didn't have that privilege! First world problems, anyone?

four || We can travel to the bathroom in groups and no one *really* bothers to question it. YES, we NEED the moral support.

five || Yoga pants and leggings... Boys don't get that luxury, ladies. OH NO!

six || We're always right and we know it... And even when we're wrong, we're still right. Make sense?

seven || We can glitterize everything and anything we want to in 10 seconds flat. That's talent!

eight || Oh, scarves. (You didn't think I would leave them out, did you?) They can fix a bad hair day or a boring outfit lickity split!

nine || In blog land, we're the majority. We kind run the show here in the interwebs!

ten || Did I mention using my period to eat chocolate in this post? 

What do you love about being a woman?