Showing posts with label invisible illness. Show all posts
Showing posts with label invisible illness. Show all posts


Invisible Illness, Guilt, Community, & Positivity

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.


I risk sounding clichΓ© 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."


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. :)


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.
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.


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 !


Handicap Placards and Dirty Looks

It's unbelievable to think that I'm here typing this with virtually ZERO tummy pain, digestion issues, cramping, constipation, or Miralax anywhere in sight. My subtotal colectomy was nearly two whole months ago, I am out of the hospital, and mentally I am feeling like a million bucks. Unbelievable. All of it.

That's not to say recovery hasn't been a bear, however. I'm still dealing with some incision pain as the scar tissue settles in and figuring out new dietary restrictions (more on that to come in another post!) has been more difficult than expected. I really, really have to watch what I eat now in order not to irritate anything and while those changes are wholesome and GOOD, it's still been a challenge! One day at a time and continuing to adjust. :)

The thing I'm most excited about is how much more freedom I have now. I'm not scared to go out to dinner with friends or worried about running out in the middle of class, a meeting, etc. to go to the bathroom. I'm not curled up on the recliner at home with 6 trillion pillows surrounding me as I reach for another Percocet. This past Sunday, I spent the WHOLE day out with my best, best friend Amy. We got our nails done, shopped a bit, met her boyfriend and another friend for dinner, and even stayed up late watching movies together!

Overall, it was a phenomenal day filled with so much freedom. I mean that. But something has bothered me since then-- something that happened before we even got into the mall. As Amy and I pulled into the bustling parking lot, I eyed an open handicap spot right near the mall entrance. Since surgery, I have utilized my handicap placard about 95% of the time I'm out and about. Though I owe no one an explanation or need to write out a list of reasons why, I will do so to prove the point I'm hoping to get across in this post. Here goes:

  1.  Prior to surgery, I was taken off of both Methotrexate and Humira. Both of these medications treat my autoimmune arthritis and keep it at bay. I have not yet "restarted" those medications due to some insurance complications and nearly any level of activity is causing "mini-flares" right now, resulting in me reaching for pain pills and using ice packs 'round the clock. Parking in a handicap space during this time and saving those spoons/that energy is truly making a difference in my joint pain right now. On Sunday, I CERTAINLY utilized my right to park there because I knew I would be out and about all day with my friend Amy. 
  2. While it has been nearly two months since surgery, my incision pain still spikes (some days more than others). It is still difficult to get up from a sitting position (or from being seated in a car) and use those core muscles that are still healing. As the scar tissue settles underneath those incisions, it definitely contributes to the pain. All we can do is wait and let my body continue to heal and do what we can in the meantime to make things easier.
  3. Last Saturday night (the night before the incident I'm about to describe), I had to take 1000mg of PM Tylenol in order to fall into a light sleep. I woke up 8+ times that night from nerve pain, dystonia spasms, and restless legs. I was unable to really fall asleep until around 3am-- and ended up sleeping til around 11:30am Sunday afternoon. That is life with chronic illness and it never goes away. Fatigue is a nasty, nasty reality.

Here's the rest of the story: as Amy and I began to turn into the spot, a pregnant woman and what appeared to be her significant other looked at us, stopped walking, stood in the handicap space, and pointed down at the handicap symbol. (Note: my handicap placard was NOT hanging from my rearview mirror yet-- I store it in my middle console when it is not in use.) That's right. They both stood there, pointed to the symbol, and then had the audacity to wave me away.

We didn't need to exchange words with them for Amy and I to know what they were ensuing. We are two young girls and both of us look completely healthy on the outside...a perfect remedy for finger pointing judgement and dirty looks. Lovely.

I waved back at the couple (ensuing "kindly move out of the way, please"). The couple proceeded to shake their heads as they started walking towards their car a row over. Amy and I parked and I looked in my rearview mirror to see the couple standing outside their vehicle staring at me. I opened the door and took a few seconds to unbuckle myself, grasp the seat, swing my legs onto the asphalt, and push up while additionally holding onto the door so I would not fall. I gave myself a second after standing up and again glanced over at the couple...still standing outside their vehicle and STILL watching my every move. The man shook his head and wagged his finger at me. I processed the interaction and instinctively sat back down in the driver's seat of my car. I reached for the handicap placard I had hung on my rearview mirror, whipped it out the door, and waved it at the couple with a smirk on my face. I then hung it back up and proceeded to get out of my vehicle.

As I was walking into the mall with Amy at my side, I whispered "can you believe them?!" as a wave of guilt ran over me. I thought "Kenzie, you're not limping today. You didn't need that spot." I thought "Really? Your freaking surgery was nearly two months ago. You can park in a regular spot now." I thought "Those people are right to point and wave at you. You're not doing enough. You need to walk more each day anyway."

...and just as that third thought ran through my mind I stopped myself. I took the key to my mind/thoughts back and said to myself "those people are not you, those people don't know you, and those people's finger-waving judgement isn't about you." Because realistically? It's not. It's not at all.

I should not and will not allow these thoughts continue, because right now is about celebrating. It is about the fact that I got out of the house for. an. entire. day. FOR THE FIRST TIME SINCE MAJOR ABDOMINAL SURGERY! Not only am I recovering...I am fighting and I am doing that in the best way I know how. When I know better, I'll do better.

While I never, ever wanted to possess a handicap placard or the right to park in a handicap parking space, I also know that utilizing that part of my treatment plan right now has allowed me to do some pretty awesome things I might not otherwise have had a shot at. I don't need to defend what I know is my reality. At the end of each day, I know I'm doing the best I can, and some days that does means using a handicap placard to help me through. But never, ever, ever does that mean I'm not doing enough or am undeserving of respect.

I want to end this post by saying thank you to that couple. Yes, you read that right...THANK YOU. Thank you for reminding me that the opinions of people like you don't matter a single bit in the grand scheme of this battle-- a battle I'm winning one tiny victory at a time. Your judgement isn't about me. I am free from it and all that it entails. Yes indeed...I am.


It Doesn't Go Away

Over the course of the past week, three people in my life have very openly asked me similar questions about what it's like to live with a chronic illness. After shortened explanations of the Spoon Theory, attempting to stay as lighthearted as possible, and the citation(s) of countless Web MD definitions... I've found even myself a bit bewildered by the pain that has forever changed the way I live my life.

Autoimmune arthritis is still confusing to me and I was diagnosed nearly 5 years ago. I don't know why I was one who inherited the HLA-DR4 gene or why I was 1 in 250 who was diagnosed with juvenile arthritis at a young age. I don't know why my immune system attacks itself and causes pain and swelling or why I can go from feeling great to experiencing writhing pain in a matter of seconds. There are so many unanswered questions that I've simply stopped asking "why?" to.

In a nutshell, here's why: even when I'm in pain, I'm Kenzie. No amount of pain, no doctor's appointment, and no medication will change the fact that I am alive and human with a life to live and the choice on how to live it. I'm a teenage girl who wants to stay out with her friends til the wee hours of the morning. I want to be able to go on a date and not worry about having to explain the pain relieving patches or joint braces covering my body. I want to live, learn, and experience just like we all do. I just go about doing so a little differently.

For those reasons and others, I've found that even when I'm in pain, I somehow find the strength to go for a run. To go shopping with my girls. I finally say "yes" to that date I was avoiding. I stay out late with my friends. I put my swimsuit on and go out to the lake. I take on another babysitting job for the week... Because I've simply realized that if I'm not living my life, no one will.

In reality, the pain? It doesn't go away. My pain levels change more rapidly than anything else in my life does. One day may be a tough one, and the next might be excellent... An OMG-this-is-what-normal-feels-like kinda day. But ultimately and realistically, my diagnosis is chronic, and that means it never goes away. It doesn't go away, so I just make room for it. I create a new normal the best way I know how, and when I discover something better, I do better.

The truth is, I don't know how to explain what it's like to live with a chronic condition. There aren't words to describe something that changes you on an hourly basis. All I know for certain is that day in and day out, this is my reality and doing what I can to create a sense of "normal" in the midst of it all is essential.

I take it all one day at a time not only because it's the best way, but because it's the only way.


This Is My Reality

It was late, I was exhausted, and I had just clicked the play button on my worship playlist. I grabbed my nighttime meds off the end table, took a sip of water, and swallowed the tiny pills just like I had a million nights prior. I reached over to turn off my lamp just as my phone lit up. After I was all nestled into bed, I grabbed my phone and opened the text message:

"I thought I could understand but I cant. Your health stuff is too much drama"

Let's backtrack for a moment here. Prior to receiving the text message that has become the premise of this blog post, I'd been having a conversation with my ex-boyfriend about the reasoning he had behind our break-up. Initially, he had lots of reasons, of course... None that truly mattered to or even hurt me, truthfully. Until he added the one I have no control over. Until, of course, he added the one that I already struggle with every. single. second. of every. single. day.

I'll be the first to admit... My first reaction? Laughter. Oh, did I laugh. I said to myself, "Okay, Kenz, he just doesn't get it. This has nothing to do with you." In fact, I was actually thinking logically for a few solid minutes...but then, suddenly, it stung.

In the midst of my little snickers, I started to fake laugh. Eventually, silent tears started rolling down my face. I dropped my iPhone on the floor, put my face into my pillow, and cried... Slowly, and then all at once, the sting I felt ebbed itself away and eased off. Through tear-filled eyes, I realized something.

This lifestyle I live...
These medications I take... 
The braces I wear... 
The limitations I face... 
The pain I feel... 
And the tears I cry because of it all... 

None of it is drama. Each of those things juxtaposed with one another create my reality.

My reality is waking up to a completely swollen hand, epicly celebrating a 1 mile run, and not being able to fall asleep at night because of the pain of a swollen shoulder.

My reality is passing out during lab work, getting excited over a new medication that might put this gruesome disease into remission, and not being able to hold my head up straight because of spinal injections.

My reality is doing my weekly self-injection at 11 p.m. on a school night after a speech meet and homework, finding inspiration in advocating for autoimmune diseases any way I possibly can, and spending long days/nights in a hospital surrounded by specialists.

And, so, to my ex-boyfriend, this blog post is my response to your text message. The only person responsible for your misunderstanding is yourself. If you're looking for a solution, take responsibility for that misunderstanding instead of discounting the lasting and varied impact that struggle has. Ask questions. Be patient. Open your mind. Open your heart, for goodness sake. And stop diminishing the importance of the things you haven't experienced.

My reality may look different. It may appear a bit more demanding, pretentious, and at times, insanely complicated...but there's not a single chance that your misunderstanding gets to say my challenging reality is merely a synonym for drama. 


My Voice Makes a Difference

Yesterday, my friend Kate wrote a post that made me sob, shake, and really want to throw something. As a rheumatoid arthritis patient, she has access to permanently disabled parking. She uses it to her discretion and for her well-being. It makes normalizing her life despite a debilitating disease POSSIBLE. As Kate was using this parking, a woman asked her what was "wrong" with her. Kate responded, crying, and explained the RA (treated by chemotherapy infusions), fibromyalgia, and tarsal coalitions she suffers from and deals with on a daily basis.

To be honest, what angers me about this situation isn't that my beautiful friend was crying. It isn't that the woman ruined Kate's night. What truly, truly angers me is that there is NO compassion for people who deal with diseases that are often invisible.

I know that Kate is so much stronger than anything that woman could have ever said to her. I know that Kate woke up the next morning determined to have a better day. The only thing that didn't change was the fact that there are still millions of people out there who will treat someone else the same way because they are unaware and oblivious.

That makes me so incredibly angry.

When starting this blog, I needed a place to vent about my health struggles. I felt alone and chose publishing my feelings on the internet instead of writing in a journal because I knew there had to be someone... ANYONE... Who was feeling the way I was. It took awhile for me to find a community I was comfortable sharing in, but it soon became the reason I got out of bed in the morning. It became the passion behind my writing. It became my purpose in life. Raising awareness and openly sharing my struggles was therapeutic and beneficial not only for me, but also for other people. People fighting the same disease I am.

Now, since starting this blog, I've had e-mails, comments, Facebook posts, and tweets come in about the disease that I, too, suffer from. Some have been encouraging. Some have been curious. Some have been knowledgeable... And some have been downright ignorant, disrespectful, and just plain MEAN.

I'll never forget the time I posted about my faith and how sure I was God would heal me when He was done using this for His purpose only to receive a comment that said, "If 'your God' is so big, why hasn't He healed you yet?" I remember responding to it with my favorite scripture and shaking my head at how unbelievable the comment was. I also remember feeling defeated. As if there was no purpose or reason behind anything I'd ever shared here.

But then I remembered this: People LOVE to discount the importance of things they don't understand.

That's when I remembered that the words I share here... The stories... The struggles... It ALL matters. It's not whining. It's not asking for attention. It's raising awareness for diseases that people are completely oblivious to. And my voice in this community... It makes a difference.