Thank you, Ashley, for sharing your story with us!
Tell us about yourself!
Hi, I’m Ashley! I am married to my high school sweetheart, John, and we currently live in South Carolina. John and I have been together for 6 years and married for 2. We both have chronic illnesses, and we are both undergrads. My husband studies Horticulture at Clemson University, and I study Health Education at Arizona State. With my degree I hope to become a patient advocate for patients who have chronic genetic diseases like me.
I have Ehlers Danlos Syndrome (EDS), which is a genetic condition that affects how I produce collagen. EDS looks different in every patient, but for me it mostly effects my joints. I am hypermobile, which means all my joints (even the teeny-tiny ones in my ears!) often shift around and cause pain. Due to my EDS, I have also developed Arnold Chari Malformation and Postural Orthostatic Tachycardia Syndrome.
I work from home tutoring and teaching piano. I also work as a virtual assistant for several non-profit organizations. When I am not teaching or working you can find me near the lake or curled up with a good audiobook and cross stitch!
What has God taught you in your valley of chronic illness?
God has taught me a lot since I became chronically ill. Most importantly He has shown me that He is Jehovah Jireh, the God who always provides. However, there are a couple specific lessons that have really stuck with me.
My freshman year of college I became very sick. I quit my work and dropped out of college. During the same time my boyfriend (now husband) moved away to attend university. Before long I became housebound, lonely, and very depressed.
One night I became so upset I started yelling at God. Why would God do this to me?! Didn’t He know it was my dream to help people? How could I help people when I couldn’t even help myself?
I sat and cried for a while, and slowly my angry tears turned into honest prayer. I felt God saying, “Learn to be content with what I have given you. Your pain can be used for My goodness.”
I recalled II Corinthians 12:9, “My grace is sufficient for you, for my power is made perfect in weakness.” In that moment I felt His peace come over me, and for the first time I started battling with my selfish desires and began replacing them with God’s contentment and peace. On occasion discontentment will rear its ugly head, but I have learned that resources like gratitude journals, prayer, and accountability partners help get me through.
At the end of 2019, just a couple years after my contentment lesson, I got engaged to the man of my dreams. But instead of feeling excited, I felt afraid and depressed. Overcome with self-doubt, thoughts like What if I am too sick to be good wife? and What if I’m too big a burden to care for? clouded my mind. I spiraled into depression. I let my unruly thoughts take the wheel and I put God in the passenger seat.
One night my fiancé pulled me aside and said, “You have become really distant.” I started to apologize, then he clarified, “Not from me, you have become distant from God.”
That evening I sat down, pen in hand, and wrote a prayer of apology to God. I wrote explaining my fears and my desire for a happy marriage. God’s response was, “You do not need a happy marriage, you need a Joy filled marriage.” Joy endures trials and hardships. A person pursues happiness but chooses joy.
The verse John 15:11 came to mind: “These things I have spoken to you, that my joy may be in you, and that your joy may be full.” After that night I started trying to consciously choose Joy. This was a hard lesson, but it was one that brought me through the 2020 pandemic and several emergency room scares leading up to our wedding.
These are just a few things the Lord has shown me during my walk with Him. God is still refining my heart every day and He knows I have a long way to go!
What Scripture has spoken to you in your times of need?
My life verse is 2 Timothy 1:7; “For God has not given us a spirit of fear and timidity, but of power, love, and self-discipline.” (NLT)
I first memorized this verse when I was fifteen and struggling with severe panic attacks. I have called on this verse many times since then for comfort and assurance. This verse is a reminder that anxiety and fear are not from God. Instead, God fills us with His power, His love, and self-control.
I also love the entire book of Psalms. If I have a particularly hard day, I will listen to large sections of the book of Psalms on the Bible App. I relate to David’s songs of lament and praise and admire his passion for the Lord. Quite a few Scripture cards from Psalms are taped to my mirror for encouragement.
What is the best part of your chronic illness?
Chronic illness has given me a lot and I am thankful for all it has taught me. It has given me the opportunity to meet new friends and join a community of fellow chronic illness warriors. It has given me a fighting spirit and taught me to be brave. It has allowed me to advocate for myself and for others. Most importantly, God has used my chronic illness as an opportunity to deepen my faith and share the gospel.
How would you encourage other women with chronic illness?
Lean into God
I cannot imagine doing life–especially chronic illness life–without God. God is Jehovah Jireh, the God who provides for all your needs. He is El Roi, the God who sees you. He sees your pain, your striving, your suffering. He is Jehovah Rapha, God our healer. He is Jehovah Shalom – the Lord of peace. I would encourage you to lean into God, learn His heart and His attributes.
Look for Support
God did not intend for us to do life alone, so it’s important to have human support systems. Community and support can be found in several places:
- Online communities are a great place to find encouragement from people who may have the same illness.
- Look for support within your church community. Maybe you could even start a prayer group for those in the church who struggle with chronic pain.
- Seek professional support.
Learn to Advocate
Oftentimes in the chronic illness world patients experience gaslighting from medical professionals or insurance companies. I am a big proponent of advocating for your health and needs. Going in front of a doctor or insurance company can be hard and scary, but learning to stand up for yourself is very rewarding and empowering. Advocacy takes practice and bravery, but I think it is something that is worth learning!
What resources have helped you?
- The Diamonds conference – a virtual conference for chronically ill Christians. http://sgwilloughby.com/
- People Hope – a community for chronic illness warriors https://www.peoplehope.org/
- Dysautonomia International – resources for advocacy http://dysautonomiainternational.org/page.php?ID=36
- Chronic Blessings by Cristy Maddox
- One Thousand Gifts by Ann Voskamp
- Anything written by Elisabeth Elliot or Joni Erikson Tada!
- My Heart is Filled with Thankfulness by Keith & Kristyn Getty
- No One Ever Cared for Me Like Jesus by Steffany Gretzinger
- I Shall Not Want – Audrey Assad
- Album: Scripture Lullabies
- Artist: The Psalms Project
- The Elisabeth Elliot Podcast
- Adventures in Odyssey – for those nights when pain is high and you need a comforting distraction.
- Breath Prayers & Lectio Divina are wonderful prayer practices to calm anxiety.
- Gratitude journaling is a great way to check your heart attitude and find more joy.