12.30.2016

And There Is No Shame

My ongoing battle with major depressive disorder began around the age of 14. It began to rear its ugly head shortly after the onset of what would later be diagnosed as seronegative juvenile idiopathic arthritis and has now become seronegative rheumatoid arthritis. The nature of this autoimmune condition is still idiopathic, meaning we have no idea what is causing the inflammation.

All that to say-- because not a lot is known regarding the nature/progression of idiopathic autoimmune diseases from a juvenile perspective, I went misdiagnosed for a period of almost 2 years. During those 2 years, I struggled intensely. I was passed around from doctor to doctor-- many of whom refused to acknowledge a single physical symptom I was experiencing. Because I was a young woman in pain, it was believed that I was clinically depressed and there was no more to the story. But for me, there was.

If I wasn't occupied wishing that death would soon come, I found myself wishing that I could at least find a way out. I figured that 'way out' had to come through one of two things: suicide, or finding a purpose in the pain. I am grateful still today that the latter won out.

Although I was diagnosed with both primary and secondary physical conditions, my mind remained in the dark. All the while I thought "Kenzie, what the hell is wrong with you? Pull yourself up by your bootstraps and get on with it. No one else your age feels this way. You have a physical diagnosis at last-- your mind has no reason to be in the depths of despair anymore."

But that's just it. Depression, anxiety, and post traumatic stress disorder have no rhyme or reason. They don't signal warning signs before they take over your life and they are far from predictable. They ravage your life and take all that they can; whether that consists of your energy, your passions, your spirit, or your ability to do something as 'simple' as taking a shower.


And that's precisely where I found myself. In the depths of despair day in and day out...constantly looking for a way to draw attention elsewhere. I got into unhealthy relationships, attempted to ignore my mind's cry for help, and eventually became convinced that this bleak life would never improve.

For 4 long years, I continued attempting to ignore the pain of both my mental health and physical state. And finally...halfway through my freshman year of college, I recognized that I really needed help. Really needed it.

I saw a free counselor on campus. Our styles didn't "jive," per se, so I decided to try someone new. I saw that new counselor for a few months and soon found myself sending her e-mails filled with excuses about how I'd have to miss our next session due to this and due to that. In reality, all I did was pull the covers over my head for another two hours and mope around when it was time to go to class.

Pretty soon, I wasn't even seeing a counselor anymore. Then the summer came, and I was referred back to a pain psychologist I'd seen several years prior as part of a pain management program. I was honest with her and began writing-- and I mean really writing-- again. Journal entries were dark during that time, but oh how therapeutic they proved to be.

"Waking up is hard. Getting out of bed is hard. Showering is hard. Pretending it's going to be a good day is hard. Starting things is hard. Finishing them is even harder. I noticed something awhile ago...I'm not excited to get dressed in the morning anymore. I used to practically run from my morning shower to my closet -- brimming with outfit possibilities and clothes that I adore. Now, I limp over to the cabinet I keep my t-shirts in, pull on a stretched out sports bra, and try to gauge how long it will take for my neck pain to kick in, radiate down my arms, and give me a migraine.  It's almost as if it has become some kind of sick game..."

That summer-- two summers ago-- became a massive game of trial and error. I was put on some of my very first anti-depressants and I saw a licensed psychologist 3 times a week. I was referred to a psychiatrist in the area and we continued to find the med combination that would work for me. We burnt through Cymbalta, Savella, Effexor, Prozac, and a list of PTSD inhibitors to help me sleep at night. Things certainly got worse before they got better.

But then, we found somewhat of a medication match. Even so...today, I still find myself somewhere between "stable" and "unstable." I am able to currently work part time, study full time, and participate in college life. For the most part, I am able to socialize, complete tasks, motivate myself, and LIVE. It's refreshing, but it's not the reality everyday for someone who is mentally ill. To advocate for that truth, I've made it my mission to acknowledge the beauty, the pain, and everything in between...most often, publicly.

Whether it's an Instagram caption turned mini blog post, a simple 140 character tweet, or an extensive post like this one that I've poured tears and so much more into...I have found that the sharing of our own realities and perceptions not only empowers us, but it breaks down the barrier that says conversations surrounding mental health are 'uncomfortable' or 'wrong' in the context of community...especially the religious/spiritual community.

I made a decision when I was first placed on anti-depressants and given a prescription for sedatives to calm me down during a panic attack or PTSD episode. That decision was this: there can be questions, there can be uncertainty, there can even be fear...but one thing you will never, ever find dwelling here is shame.


Let me tell you something, friends. Mental illness does not discriminate. That is unfortunate. Even tragic for some. But what we must also remember is that neither does the ability of HOPE to carry us through. There is always hope.

"I will turn their mourning into joy. I will comfort them and exchange their sorrow for rejoicing."
- Jeremiah 31:13

Physically, this has been the most painful year I've experienced yet. Mentally (though there were certainly moments of great triumph), I would have to say the same. It has been painful and so so heavy to carry this pain around and it's been even harder to the ignore the stigma that is associated with such struggles.

I have had 3 intense scares with my mental health in the past month where the idea of hurting myself became more than a distant thought. I spent several nights in hospital psych wards not knowing how I got there or if I would get to go home that day.

3 weeks later, I am much more stable. We have adjusted medications and I am being followed closely by multiple competent physicians. While I'm "okay," I'm also still struggling. That in and of itself (as previously mentioned) is a pretty freakin' weird limbo to be in.

A quote I read once says "it is necessary to let things go, very simply for the reason that they are heavy." That couldn't be more true, especially right now. I don't think I've ever resonated with something so strongly.

I have been given the opportunity to embark on a European study abroad adventure on January 4th and will be away until the 26th. I am very, very much looking forward to the respite and perspective this trip has the potential to provide and cannot wait to share those adventures through writing and pictures with many of you. For now, though, I need to (and am going to) step away.

Social media (and this blog in particular) is an instrumental part of my life and journey any way you hash it, but sometimes we need space -- even from the things that make us feel most alive and ourselves.

And there is no shame.


11.28.2016

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.

INVISIBLE ILLNESS

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 #ChronicLife 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 #ChronicLife 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 Twitter, Instagram, 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.

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