This guest post is part of the Good Ways blog series, a collection of stories and practices for finding God in hardship.
About a year ago, after years of experiencing low energy and over a month of unexplained chronic pain, I was diagnosed with fibromyalgia and chronic fatigue syndrome (CFS). I had just turned 22. I’d hoped to finish college in December, 2016. I had just allowed myself to start getting excited about what life post-graduation might hold. The diagnosis threw a giant wrench in my hopes and plans.
Fibromyalgia and CFS are chronic illnesses with overlapping symptoms such as severe fatigue that doesn’t improve with sleep, nerve and muscle pain, executive dysfunction (brain fog, lack of focus, memory problems), and anxiety. Stress, viral sickness, or overexertion can exacerbate these symptoms, causing “flares” that can put you on bedrest for a few days. The medical causes of fibromyalgia and CFS are unclear because serious research on them has only begun in the past few decades, but there are a number of theories based on what treatment has been found to be most effective. Treatment options range from lifestyle changes (stress management, dietary adjustments, low-impact exercise, etc.) to prescription drugs to manage pain or regulate sleep. Most people find that a combination of medications and lifestyle changes is most effective in alleviating their symptoms and improves their quality of life and daily functioning levels. That being said, fibromyalgia and chronic fatigue are almost always life-long conditions.
In some ways my diagnosis helped my life make more sense. I’d felt for years that I couldn’t do as much as other people my age. I hadn’t had enough energy to cultivate a rich social life in addition to staying on top of my coursework and doing basic everyday activities like commuting to school and feeding myself. I’d struggled with depression on and off since beginning college. For years it seemed like there was something wrong with me because I couldn’t do what other people could do, and I thought it was my fault. Discovering that there was something wrong with me, but that it wasn’t my fault, was a huge relief.
However, as you can probably imagine, relief was not my primary emotion. In January 2016, I had been perfectly healthy, or so I thought. By the end of February I’d been almost completely bedridden for three weeks, I was experiencing consistent pain in my back, hips, and legs, and I could only manage to do about 3 hours per day of any activity that wasn’t sleeping or watching Netflix. So, being told that my condition was chronic was painful in a whole new way. My doctor assured me that we would find a treatment plan that helped to alleviate my pain and fatigue as much as possible, but this would be a matter of trial and error, and I would most likely be treating these symptoms for the rest of my life. I was heartbroken. I felt an intense sense of loss when I’d think about how I’d imagined my life before my diagnosis. I’d pictured myself being full of energy and life, always working on projects I was passionate about, always creating community for my friends and neighbors, going on long hikes on the weekends, always working hard and loving hard. That life seemed completely out of reach after spending a month in bed with so little energy I could barely read.
The pain of loss, combined with the experience of daily, constant physical pain was intensely isolating. I’m convinced that isolation is the worst part of pain. Although my family was supportive and caring, I could barely leave the house except to attend classes, and in class I was too tired and distracted by pain to socialize with my peers. I didn’t have a lot of friends, and was worried that the friends I did have would soon get bored of hearing about my health problems and visiting me when I couldn’t do anything fun. It was so tempting to just not tell people what I was dealing with, especially because the meaningless platitudes that some people offered were almost worse than the isolation. Being told, for example, that “God is in control” when you’re in constant physical pain, doesn’t really make you feel any better about God, your pain, or the person trying to reassure you. In my experience, it just makes you angry.
Despite this, I’d learned in previous seasons of life that community and connection to others is one of the most important ways that God offers me comfort when things are difficult. So, I challenged myself to be open with people about what I was going through, and (even more important and terrifying) to ask people for support and comfort when I needed it. I started with practices as simple as texting a couple of my closest friends on days when the pain or fatigue was particularly bad and asking them to pray for me. Sometimes this was easy, sometimes I felt so anxious about being a burden, or boring people with my problems that I cried for an hour before getting up the courage to ask for support. The results were almost always good. My close friends would text back or call and offer support, prayers, a listening ear, and even reassurances that they wouldn’t get sick of hearing about what I was going through. More publicly, I wrote about my experiences, shared ways for people to support me if they wanted to, and clearly defined the boundaries that I needed respected. Sharing honestly about what I was going through made me feel like I was free to experience it without pretending to be more okay or more hopeful than I was.
Reaching out to friends started as a practice and became more and more habitual. Sometimes I still feel anxious, or self-conscious about being a burden, but practicing vulnerability has made my close friendships safe places for me to feel those worries and to voice them. Intentionally practicing vulnerability by sharing my experiences and asking for what I need helps me to feel less alone and to feel God’s presence even through pain and grief.
Hailey Joy Scandrette is the editor in chief of Ignited Magazine, an online community for young adults seeking to practice the teachings of Jesus. She is also a senior at San Francisco State University studying US History. When not ears deep in primary source analysis and note taking, she enjoys thrift shopping, writing, climbing trees, and going on long walks with her friends and family. She is passionate about social justice, living incarnationally, loving and serving others, and almost anything else that she has any opinion on. More of Hailey's writing can be found at ignitedmag.com and at haileyjs.wordpress.com.