Recently I have decided I wanted to share some more about myself and my past and how I’ve come to be who I am today. Although to most I seem as though I am the average twenty-year-old college girl, my life has been quite far from normal.
Most of my life I have kept my arthritis and health hidden from everyone. I let no one in. Why did I do this? I didn’t want pity and most importantly, I didn’t want to be treated differently. While growing up, I have always wanted so so badly to be “normal,” whatever that is? Those close to me know the surface information about my RA and gut issues but that’s as far as I’ve opened up. I’ve finally gathered the strength to share my truth. As my mom said to me one day, “You know the saying, ‘the truth will set you free?’ Maybe it’s time you share yours.” I’m terrified to let go and live my truth, but I also feel this longing to share and help even just one person and I think I am finally ready.
I was diagnosed with Juvenile Rheumatoid Arthritis at the age of eight, when I was in the third grade. I remember how it all started. Prior to this, I was flexible and loved to dance, do the splits, and had begun to take gymnastics. I loved being able to bend and flip around. Then the arthritis crept in. I remember describing my stiffening joints as having a “weird feeling,” such as when I bent my wrists back to put weight on them when doing a cartwheel or back handspring. My knees couldn’t bend all the way anymore for me to sit on them. I remember describing all of these feelings to my mom, while thinking nothing of it. I would turn my hands into fists and perform a cartwheel and back handspring in this way instead because it felt better. I just thought of it as something strange about myself, a weird quirk. My mom soon noticed my hands were swollen and rashy. Thinking I had eczema, she took me to a doctor, which would be the first of many. I can still picture the woman telling my mom I tested positive for JRA. It’s funny to think back on this because when I heard the word “positive” I thought it was a good thing. I was eight and had no idea the depths to which this disease would affect me. All I knew was that old people get arthritis, not kids like me. The doctors advised my mom to put me on heavy medications that would have me in and out of the hospital, likely cause stomach and digestive issues, along with possible weight gain and hair loss, and most importantly leave me at higher risk for cancer. My mom immediately put down this option and I am forever thankful for that. I believe this allowed me to live the most normal life I could while suffering from this disease.
My disease and stiffness progressed through the years as I did whatever I could to ignore it and pretend it wasn’t there and didn’t affect me, yet deep down I longed to be flexible again and be able to move like a normal kid. I had to quit dance and gymnastics and could no longer sit on the ground comfortably, if at all, or do anything on my hands. Every day at school I’d worry if the teacher would ask us all to come sit on the ground because what would I do? I feared that everyone would look at me weird and wonder why I had to slowly and strategically get on and off of the ground and why I could only sit with my feet out in front of me. Gym class filled me with anxiety and fear daily. I couldn’t perform a lot of the activities and had to constantly make up excuses to my classmates and friends about why. My mind was flooded with terrifying what-ifs and the daunting thought that “they will all find out.” The simplest activities and daily tasks would cause me the greatest anxiety. One of the worst of my pain was in my ankles. If I had been on my feet a lot during the day, my ankles would begin to swell up and become extremely stiff. Walking would turn to excruciating pain and this kept me from enjoying a lot of school trips and family outings throughout my life.
I continued to get stiffer over time and high school arrived. I still did everything in my power to ignore it. I still kept this part of my life a secret, never telling anyone about all of the doctors appointments and supplements I was trying. I spent many nights crying softly to myself and pleading God for my mobility back. My heart ached for all that I couldn’t do. I never told anyone this though. High school was a time where I just wanted to fit in. I wanted to be normal and do normal things. When things came up that I couldn’t do, such as going to a fitness class, I often blamed my immobility on being “unfit” or “not athletic.” This wasn’t true, yet I soon began to believe it. I beat myself down again and again when the real reason wasn’t, and isn’t, that I’m not fit enough or flexible enough, but that I have a disease that doesn’t allow me to move like everyone else. My hands grew stiffer and more bent and people often inquire about my bent thumbs and knuckles. I have always brushed it off as, “My hands are just weird like that.” I’ve had to make up excuses a multitude of times for why I look the way I do and why I move the way I do.
It’s hard to explain how arthritis affects me because it’s not always easy to see. Holding pencils and silverware is sometimes hard for me. Getting down on the ground is difficult and uncomfortable. My joints are so stiff that I easily pull muscles due to tightness. My shoulders bend inward because of stiffening. My elbows no longer come close to straightening or bending all the way. I can barely get my hands to make half of a fist and my hands are those of a 78 year old woman. These are all part of my body that I have to accept and deal with daily.
My sophomore year of high school I decided to stop ignoring my health and take control of it. I began my healing journey through natural supplements, healthy diet, and physical activity. I continued to keep my body moving and as healthy as I possibly could until my freshman year of college when things changed. I began experiencing severe bloating, digestive issues, trouble sleeping, and sometimes depressed thoughts. This was all new to me; I wasn’t used to these symptoms in addition to all I was already dealing with. I felt like I couldn’t handle it all. I was a stressed mess. I didn’t know what to do or why my body was rejecting me and felt defeated. I felt like I would never be healthy and happy. I ended my first year of college in a really poor state of health and mind. I felt lost and didn’t know how much more I could handle.
That summer was when I was told I had a “leaky gut.” I was put on a strict elimination diet to try and figure out how to heal my gut and thus, hopefully heal some symptoms and restore some health I had lost. This past year I have dedicated myself to healing. I continued doing my best and eating as best I could to heal myself as well as focusing on positivity. I eat mostly a combination of paleo and AIP type diet. This, in combination with my arthritis, has tested me plenty of times. I’ve sacrificed being “normal” for my health because I have finally realized that I want to live my life as me, not pretending and hiding. I have grown so much in the past year and learned so much about myself and autoimmune diseases.
I’m now at the point where I want to share my experiences and lessons with others. Just a week ago I had a lactulose breath test that diagnosed me with hydrogen SIBO. I am now working to treat that while continuing on my healing journey. If I’m being completely honest, there are days I want to give up completely. I want to scream in frustration and plead, “why God, why? Why am I faced with all of these challenges? Why can’t I be a normal college kid who just worries about rallying in time to go out the next night?” I constantly have the overhanging worry of where my body will be in 5, 10, 20 years. Will I be stiffer? Will I still be able to walk? Will my body be healthy enough to bear children? It’s often hard when you want to act your youthful age and live carefree, but you are stuck in a restricted body.
I’ve cried, hit rock bottom, prayed for it all to be taken away, complained, worried, and now I’m finally accepting my truth and opening my eyes to all of the good. God gave me this mountain to climb for a reason. Maybe I’m meant to help others who are dealing with extraordinary situations? I want to bring light to invisible illnesses. I have a chronic illness that I’ve kept hidden for over ten years now. I want people to understand that the saying “You never know what people are going through,” shouldn’t just be a cliché saying. You really never know. Just because someone doesn’t look sick doesn’t mean they aren’t. Everyone deserves kindness and you never know who may need it most. I also am now understanding that it’s okay to not be okay. I’ve used my strength to put on a smile on and act “fine” every single day, even when many days I am not. I am sometimes sad, upset, frustrated, and angry but I’ve kept it bottled up for all these years because I thought no one would understand my story. No one would understand what I’m dealing with. Whenever I thought to myself, “Why don’t you tell some of your friends about it all? Tell them the true, whole story and depth of your disease?” I would then immediately snap back to reality while reminding myself that no one can really understand. I can’t easily describe how this “stiffness” feels, nor can I describe the defeating feeling of not being able to bend over to properly paint your own toenails or participate in a yoga or workout class with friends. I finally realized that that’s okay. It’s okay if no one can truly understand-that doesn’t mean they can’t know or can’t listen. I want to share these thoughts and feelings so that anyone else going through something similar or feeling similar emotions can relate and know they’re not alone and that we all face challenges.
I often look down at my bent up hands and a pang of sadness hits because I long so badly for them to be mobile, nimble fingers. I long for them to be able to bend into a fist or lift a free weight or simply open a jar. I long for so much movement. But then I thought the other day as I looked down at my hands, all else they symbolize to me. They symbolize all that I’ve endured. These hands and this body, have carried me through so much. It may be failing me in other ways, but it is still here to hold and carry my soul. I am so much more than this body in which I dwell. I am so much more than my physical disabilities. I am so much more.
Every day I am striving to improve. Striving to heal. Looking to the Lord for the strength and hope to go on. There is a reason for this and a reason I am here, a reason we ALL are here. We all have a purpose. Recently I have felt compelled to share who I really am, and maybe this is leading me closer to MY purpose. And while this disease fights me every single day, it also strengthens me every single day. I’ve learned to focus more on who I am in terms of my friendship, loyalty, kindness, and passion. I’ve learned to look at who people are on the inside because that is what I want others to do for me. I’ve dedicated myself to healing my mind, body, and soul. It is an ongoing journey, and as I continue the process, I have also discovered a passion for cooking foods that fit my diet. I’ve been having fun trying out recipes that are healing to my body and also taste delicious. I want to share this with others who may be suffering from auto-immune diseases, gut issues, or just want to try new healthy recipes. I’m starting this blog to share my journey of hope and healing (and recipes) with others in the hopes that it may inspire or help someone else out there.
You are not alone. And neither am I.
Thanks for following along!
Thanks for sharing your story. I too have RA and can relate to some of the things you talk about. May God continue to bless and keep you as you share your journey. You are a brave young lady. Keep moving towards finding your healing.
So heartfelt and pure. You got this, girl. 👊🏼
Wow. I am speechless. This is a tear-jerking post to say the least. Thank you so much for sharing your unique journey. Even as someone who doesn’t suffer from a disease, it’s incredible to get to learn your perspective on life. I hope you keep uncovering the layers of yourself that let light in! You’re shine certainly lightens those around you too.
This was so beautiful Sami! Thank you for being so open and positive in the face of suffering. Romans 8:28 "And we know that in all things God works for the good of those who love Him, who have been called according to His purpose." Also your blog is so beautiful I need to step up my game!!!
As a mom of three girls I’m reading this and am brought to tears and filled with hope. Look at you turning a challenging hand of cards you’ve been sent into a powerful journey of helping and inspiring others. A friend of mine was just diagnosed with RA. Has CBD been something you have tried? I’m brainstorming to try to support her xo