Broken Body
When I was 21 years old, I was diagnosed with the disease called Ankylosing Spondylitis (A.S.). To put it simply, it is an autoimmune and inflammatory arthritis that affects my spine, hips, and other joints. The harsh reality is that my body is confused and attempts to fuse my spinal joints together, leading to pain, stiffness, and fatigue. There is no cure, only treatments such as exercise, medication, and physical therapy. To say the very least, I was overwhelmed with this news.
At the time, I had been searching for answers to why I was feeling constantly tired, stiff and in pain; in addition to other symptoms that seemed unrelated. Although I was relieved to have some sort of explanation, it took some time to understand what this news meant for my future. And it certainly made me question what God had planned in my life.
The Reality of Living with Chronic Illness
The twenties are known to many as a time of adventure, figuring out who you are as a person, and entering the workforce. I did experience some of that, but it was dampened by the limitations of the disease. I felt like I was missing out on life. Like I said, at 21, I was given this life-changing news. Although I had been experiencing unexplainable aches and pains since I was a teenager, I had no idea how broken my body truly was. Having a chronic disease that needs constant monitoring requires more than you might think: finances to cover medication and appointment costs, time off work for appointments, unplanned sick days, routine blood work, x-rays and other forms of imaging; supplemental treatments, dedication to beneficial exercise, symptom monitoring and saying “no” to friends or family because of a health limitation.
I start off the day completely aware of my aches and pains; because after resting in bed, my back is stiff. In the mornings, my body can be quite slow as it loosens up. My mind seems to be full of worried thoughts about how I will get through the day based on how I am currently feeling. Emotionally, I feel bogged down by anxiety and depression. Sometimes, I even feel like a burden to those around me, afraid to share how I really feel. I am aware that hearing “how I really am” can be tiring for those who have little to no health concerns. My symptoms change so dynamically that it can be difficult to plan ahead.
A pivotal moment that brought the reality of my illness into sharp focus was when I had to explain my diagnosis to my now-husband. I had to detail the disease's potential progression and what my future health might entail. Speaking through tears, it was incredibly difficult to articulate the uncertainty and sorrow I felt. It was a challenge for me to envision a future for us when this reality was constantly looming over me.
Wrestling with Faith
Visiting the rheumatologist's office reminds me that I am a rare case. While it is a rare disease, it is even more rare to be diagnosed as early in life as I was. It is thought that rheumatological diseases are just for old people- they are not. There are some days when I feel blessed and other days disheartened. Questions creep into my mind: why is this happening to me now? Why did I get diagnosed now after so many years of searching? How would my life have been different had I been diagnosed earlier? What kind of life will I be able to lead with constant pain and monitoring? Will I be able to do everything that I dreamt of doing? Can I keep up with my friends?
When I was younger, I had many insecurities as young girls do, one of which was my curly hair. As I got older, I learned how to care for and embrace it. Months after I started treatment for the A.S., I started developing psoriasis on my scalp which led to a considerable amount of hair loss. At the time, I didn’t know the cause. My confidence tanked, I was self-conscious, and I started to hide. I asked so many questions of God. Why would God give me beautiful hair and take it away? Why couldn’t this medicine help treat my disease? Why couldn’t this be easy?
Redefining and Refining
God has made a way for doctors to discover and research the disease, provide effective treatments and ways to monitor it. That in itself is amazing! With various doctors’ expertise and some time, my hair did eventually grow back, though it was different than before. I consider this a reminder that God provides healing even if it isn’t how I envisioned it.
When I feel stiffness or pain, I ask God to take it away, distract my mind from the pain and to give me strength to bear it. I realize that I have limits for a reason: they remind me to lean on God, my Healer, the Great Physician and Comforter. Contrary to what some may say, God is not a crutch. He is a real person walking beside me, holding me up.
It is a fight to keep my attention on Jesus in the midst of my difficulty, but it is oh so important! The psalmist writes in Psalm 121:1-2, I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.
What we focus on matters! If I continue to dwell on what my body is not capable of, then I discount God from working in that area of my life. Rather, I can talk to God about my feelings, physical hurts and let Him take care of it, being confident that He can; and in the meantime I can be faithful to do what I am able. I am comforted knowing that no matter the time of day or how many times I cry out, He hears me! (Psalm 55:16-17)
Music has always been a safe place for me because I feel heard and seen. This is where God often meets me. For a season of my life, it seemed every time I got into my car, the same song played. God meets with us where we are because He loves us so completely. He never wants us to forget that!
As I was writing this, a song began playing that I hadn’t heard for some time. I encourage you to play it: Completely by Finding Favor. It speaks of the struggle to believe in God’s promise to heal, God being strength in our weakness and believing healing will come. Songs like this can be helpful tools if you have no words of your own to describe the pain and hopelessness you feel. They remind me to cry out to God, especially when I can’t see Him working.
I can say confidently that God was with me every step. Not just on this particular journey, but through my entire life.
If you are struggling with pain or hopelessness, talk to God about it; no matter how big or small it may seem. God is waiting for you to turn to Him for help and comfort; He is ready to give it.
There have been seasons when I have experienced confusing symptoms or expressed my frustrations to fellow believers. I’m so thankful I had people praying with me for healing and resolution. Praying together with fellow believers is one of the most powerful experiences one can have. If you haven’t already, find a community of believers who belong to God and to each other.
