In the days and weeks to come, I struggled to get out of bed, dress myself, and put on a brave face. Somehow, by what I believe to be the grace of God, I did it. One morning around 5am, I woke up abruptly. Pain was shooting up and down my legs, through my abdomen, and back and forth between my head and neck. As I writhed and tried to restrain myself from screaming, I quite literally rolled out of bed. Using what little strength I had, I crawled to the bathroom, turned on the water to a somewhat scalding temperature, got into the shower, and laid down. I curled up in the fetal position and tears began to stream down my face as I came to terms with the fact that I may never, ever know what "pain free" felt like again.
In the months to come, I visited my primary care physician more times than I can count on two hands. The people in my life at that time may not remember me missing from class, family dinners, cross country races, or sleepovers...but I can assure you that I missed them, and in more ways than one. Not only did I miss them physically, I missed them emotionally. Every aspect of my day-to-day life had changed. Suddenly, the free spirited, naive freshman I knew myself to be had become a miserable sufferer who felt trapped inside her own body and mind.
It was at this time that I began to shut anything and everything out, convinced that I was the only one who felt the way I did...convinced that there was something wrong with my mind. Doctor after doctor told me that I was clinically depressed...that the blood tests were normal...that I would be okay with time and visits with a psychologist. They did not acknowledge the widespread pain that continued to overrun my body. They did not acknowledge the weight I continued to lose. They did not acknowledge the pain induced nausea that prevented me from eating. They did not acknowledge the swelling or redness in my joints or along my spine...and every time I broke down crying because no one acknowledged those things, I was handed some more little white pills and crinkled sheets of paper that contained referrals to mental health professionals I had not yet seen.
I can tell you one thing for certain about this chapter of my life: I was in extreme physical pain and I wanted to die because of said pain. I was grieving the loss of a "pain free" life (I'm STILL grieving that loss) and what it meant to be a teenager without much of a care in the world. I was grieving the loss of the freedom that my own body had taken from me.
During this time, it may have appeared that I began to internalize things and remain inside my head. It may have appeared that I rapidly became more withdrawn and distant. While I will openly say that all of those things are 100% accurate, I can also say with complete assurance that none of them happened because my pain was "all in my head," nor did they happen because I was seeking attention. They happened because my body was and IS attacking itself.
It wasn't until nearly a year of suffering that some answers were granted to me and my mother who was beyond desperate to understand. It was then that I was diagnosed with juvenile enthesitis-related arthritis, fibromyalgia, and moderate disc degeneration in my cervical spine. It was then that my pain was acknowledged. It was then that I was finally listened to by healthcare professionals. It was then that I finally had a name for the monsters I had been fighting.
Was I depressed at this time? Absolutely. Was I anxious and afraid? 100%, yes. Were those feelings caused by a figment of my imagination? Absolutely not. Those feelings were caused by underlying issues that went unacknowledged. Those feelings were caused by the extremity of distracting pain I experienced as I sat through Civics class trying my hardest to pretend it wasn't there. Those feelings were caused by the school events and sleepovers I missed because I was at home in bed, begging a God I wasn't even sure I believed in to heal my body or take my life (and I preferred the latter). Those feelings developed over time as reports of my pain were diminished, my judgements were questioned, and my time was wasted by people who did nothing but abuse my naiveté and try to talk me out of something that had so physically manifested itself inside my feeble body.
Not being acknowledged or accepted began to destroy me. And then I met Jesus. And Jesus taught me that we may not be able to understand or empathize with everything everyone goes through -- we are not Him. He taught me that we may not be able to find just the right words to say or just the right gift to give -- we are not Him. But just because we cannot or do not understand something does NOT mean it does not exist...and what we can do is precisely what He created us for.
We can get on people's level and sit with them there. We can put our hand on their backs and rub it gently until the tears cease. We can offer warm, inviting hugs and we can lend a listening ear when they need to vent. And even when a mix of all of those things seems exhaustive...there is more. We can be transparent and share the truth. The truth that says we as humans are not all-knowing or invincible. The truth that affirms the fact that we may not be able to understand everything, but we genuinely desire to understand the best we can without experiencing it. The truth that acknowledges that we may not be able to take away the pain...but if we could do so, we would in a second.
A morning not too long ago, I woke up in my dorm room to the sun shining through the blinds. As I tried to get out of bed, pain shot up and down my spine. I shrieked and fell back onto my pillow as I began to have flashbacks from that brisk October morning just over 5 years ago. The pain. The fear. The desperation. It felt all too familiar...except this time, I didn't begin to wish my life away. Instead, I simply spoke 6 words aloud: "I can't do this without You..." And as I said that, I just knew. I just knew that I was not alone.
If someone you love has a chronic illness of any sort, I want you to know that it's not personal. The cancelled plans, the quiet demeanor...none of it is because of you. Most importantly, I want you to know this and this alone: acknowledgement matters. Complete belief, unending love, and absolute support are all things that matter. And though you may never be able to fully understand, loving people through and because of their pain in those ways will mean more to them than you will ever know.
I don't know who I wrote this post for. I don't know if anyone will read this and think, "WOW, I swear she took these thoughts right out of my own head." I don't know. I really don't. But what I do know is there's a chance. There's a chance someone out there is laying in bed, curled up in the fetal position, and writhing in pain right now. And whether that is because of chronic pain or mental illness or something entirely unrelated to either one of those things...they are waiting. Waiting to be acknowledged. Waiting to be heard. Waiting for someone to get on their level and sit with them there. And if that's you...if that's you there waiting, I want you to know a few things: you are not alone, the God who created you is the God that is with you, and He is not finished with you yet.
I know it hurts and I know it feels like your world is crumbling. I know it feels like you will never be well again...and maybe you won't be on this side of Heaven. But He has promised marvelous things and He who promised is FAITHFUL. I believe that there is a reason for every ounce of pain in this world and I believe that He can use yours -- yes, even yours -- for your good and His glory. It doesn't mean it will be easy. In fact, I know it won't be...but He will be your strength and He will complete the work in you that is not yet finished.
7 comments:
thanks for this post! I love it!
With the new health issues that I'm fighting right now, I definitely needed to read this today! Thank you friend!
You are definitely in this world to make a difference my dear girl. You WILL continue to inspire and MAKE A DIFFERENCE in the lives of many by sharing your life story!!! Much love and many hugs to you dear girl.
You have such a way with words Kenzie! I love reading your posts & your heart!
I just found your post through a Facebook Page and it was exactly what I needed to hear today. I've been experiencing chronic pain for the last 5 years and it wasn't until a couple of months ago that anyone believed me that there was pain that no one could explain. I was recently diagnosed with Fibromyalgia and I've felt so alone about it.
It's nice to finally have a name for what my pain is. It's nice to know that I am not alone.
Love, Jenn
www.thediaryofadreamer91.blogspot.com
What a wonderful testimony! May God continue to hold you in his loving arms!
When you wrote that you no longer wished your life away I felt your pain since I had wallowed in my own pity party until a friend sent me the song by Casting Crowns, "I Will Praise You In This Storm" I can totally relate and Praise God that He got through to you too! Well written story taken from your life story by the greatest author in the world, God! God's blessings to YOU!
Kenz, thank you for sharing your story! I have a 14 year old daughter who has an extreme case of jia. I am the mother in your story. My daughter was diagnosed at 11. Her illness manifested my total surrender to Jesus! At the pinacal of her suffering, I fell to my knees and surrendered my evorything to him. I have been a believer my whole life but was not walking in his light. I came to the end of myself at this time and had no one else to turn to. He was the only one who could save her. That night I gave him my soul and in return he gave me a dr who found an answer.... 3 hrs after i surrendered my life to him.
Please know that you will forever be in my prayers! I know all to well the daily struggles you face. The lack of compation and understanding. The stress and strain of countless medications, injections, and tests. But know that you r not alone! Your faith will bless you and is already blessing others! God is working through you! Thank you! And I pray you are blessed! JIA mom