Life with a Chronic Illness

A few weeks into marriage, I was looking over the Otago Peninsula with my husband and some students from the campus ministry. We walked from the parking area to a scenic spot and were about to ascend the hill. I felt my entire body and mind screaming in pain. It had taken most of my energy and strength to walk to the picnic table, and I was trying to hide my weakness. I’d been in denial up to that point. As they started on the track, I faked a smile and said that I’d stay behind to enjoy the view. In reality, I was in so much pain that I knew I wouldn’t be able to stand or walk, much less uphill for 30 minutes. I watched them walk away, full of joy and excitement. Tears of anger and hopelessness started welling up within me. It was finally sinking in that this pain that hadn’t left me for over a year might be a lifelong companion. I might never know what it felt like to have a “normal” body ever again.

I’ve been living with Fibromyalgia for over seven years now. The Mayo Clinic describes it as “a disorder characterised by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe Fibromyalgia amplifies painful sensations by affecting the way your brain and spinal cord process painful and non-painful signals.” It sounds clear-cut, but in reality, how it affects me is very unpredictable and debilitating. The only predictable element is that every day there will be pain.

It took over two years to receive a diagnosis, and while the research from medical professionals showed this would be a lifelong struggle, I was relieved because I had thought I was close to death! I struggled to sleep most nights because the pain would keep me awake. When I finally fell asleep from exhaustion, I’d wake up screaming from the pain caused by any movement. I felt vindicated after the diagnosis; I could finally put a name to what I had. The things that were happening in my body were “normal” to the disorder.

The diagnosis also meant that I could start looking into treatment. So far there is no cure, so treatment means reducing the severity of the symptoms in order to improve my quality of life. Painkillers don’t offer me much relief so I stay off them as much as I can, but I keep stronger ones for emergencies. I’m on a low-dose antidepressant which alleviates some of the nerve pain, and has helped with my fatigue and mood.

I’ve been through all the stages of grief as I’ve processed the idea of this suffering being lifelong. I’m no longer the person I used to be; my body can’t do what I used to consider normal things. My heart’s desire was to serve the body of Christ with my whole life. So when I had to consider that I could potentially be bed-bound for the rest of my days, unable to freely do all the things that brought me joy, I felt a huge sense of loss. I really wrestled with my self-worth and what it meant to now be perpetually needy. I grieved the death of the person I used to be, and her capability. I had to rest in what couldn’t be taken away from me. Even if I never served again and was totally dependent on outside help, I was made in God’s image, with inherent worth. Through this, I’ve been deeply struck by God’s love for me. A love that is eternal, gracious, and unchanging. It means I can rest in my identity as a child of God, fully known and fully loved.

Still, it’s a constant fight to set my mind on heavenly things instead of earthly things. Envy can still be a big temptation for me, especially being around others my age. On the outside, I look the same, but I know most of them don’t have to think about whether they can trust their own bodies to do basic things like walking, or even standing up! I’ve had to fight the temptation to resent God for “making me this way”, and wrestle with the question, “How does this bring glory to my Maker?”

I know a lot of young people who cling to this life because it has so much to offer. In paring back the joys of this world, I have no fear of dying young; I’m ready to be with my Saviour at any moment. As much as I love my husband and the people in my life, I see being with Jesus as a treasure beyond anything this world can offer me. Though temporal things pass away, Jesus remains. I do struggle with fear though. Most days I try not to worry about whether my body will function the way I want it to. I just go with what I’m able to do at a particular moment. However, when there are weeks of relentless agony, I fear what the future might hold. If it feels like this now, how do I see growing older as a blessing and not a curse?

I think chronic illnesses, unlike temporary illnesses, are very in-your-face with regard to the brokenness of this world. It can be hard to look into the face of someone for whom there is no goalpost for healing. There’s no quick fix, no surgery, no miracle drug. It means wading into the uncomfortable waters of their prolonged suffering and accompanying them through its murky waters for a while.

At times I have felt very alone in my struggle and found it difficult to be honest with people at church. It felt like my struggles were being minimised when I voiced them. I felt like I couldn’t deal with the extra toll of not being taken seriously when I was in great need. As you talk to suffering people, please be very slow at trying to find reasons for why someone might have a chronic illness. It is not helpful to hear, “Maybe you have unresolved sin in your life” or “This is to allow room for others to grow in their gifts”. Be quick to listen, slow to speak. Be patient as they work through their struggles. Don’t try to rush the process with pleasant platitudes and positive thinking. Trust that God is working in His timing as they wrestle through what it means to suffer long term.

Also, ask how you can be praying. Often, we’re quick to think that the main problem is the physical suffering, but sometimes that might not be what they’re needing prayer for at that moment. It can be very hard moving from independence to dependence, and it’s very humbling to learn to ask for help. Be proactive as you listen to their concerns; “I would love to make you a meal sometime”, “I’m happy to pick up your groceries the next time I go out”, “Would you like a companion for your doctor’s appointment?”

Over time, I’ve been encouraged to see God use the hard times for His purposes. Like Joseph, the Lord has let me see good come out of hardship. This makes it easier to be patient and persevere during hard times because I can trust in His timing, in His goodness, and His faithfulness to fulfil His promises. His word tells us that He’s using these trials for our good (Rom. 8:28), that he is refining us for a genuine faith more precious than gold (1 Pet. 1:6-7), and that He will use it to minister to His people (2 Cor. 1:3-7).

As I’ve sought to be honest about my pain, the Lord has given me opportunities to share about the hope that I have with people who ask how I am able to carry on. People who wouldn’t listen to an evangelistic message ask me how my faith shapes how I view suffering.

It’s taken a few years of walking through the valleys of suffering before coming to a place where I can see the light of hope breaking through the canopies. I might never have a “normal” body ever again, but through this time, the Lord has taught me to look for Him in the shadows, and to walk alongside others struggling in the darkness. He is my true lifelong companion who has stretched my heart that I might be able to not only rejoice with those who rejoice but weep with those who weep. He has proven himself to be the Father of mercies and the God of all comfort, who comforts us in our trials, so that we can comfort others in theirs.


_____________________________________

This article was contributed by Jaia Vucetich. Jaia is a student of Grace Theological College and member of Covenant Presbyterian Church.


104 views0 comments

Recent Posts

See All