Say hello to one of our Focus Fix Fam members, Jess Millar! When I was invited to write an interview for our People Hope blog, I knew I wanted to talk with someone who, while they may not walk with chronic illness themself, love and support a chronic illness warrior. *Enter Jess.* When Jess joined our Focus Fix Fam, she was very upfront about the fact that she does not have a chronic illness; however, her boyfriend, Andrew, does. As a way to better understand and support Andrew, she joined People Hope. Jess has such a beautiful perspective, and we are so excited to hear her story and learn more about what it’s like being on the other side of chronic illness. So, without further ado, let’s meet Jess!
Q. Hey Jess! Thanks for talking with me. Tell our readers a little about yourself!
Hi! My name is Jess and I’m a 21-year-old student nurse living in Western Australia! I spend my days either working - I work at a gym crèche [for all you American readers, a crèche is essentially a child care service] -, studying for nursing, hanging out with my boyfriend, helping out with kids programs at my church, and attending a Bible study. I enjoy exploring cute little cafés, and I love blueberry vanilla tea!
Q. I understand that somebody you care about battles chronic illness. Would you tell us a bit about him?
My best friend and boyfriend, Andrew, is one pretty cool guy (though I guess I’m a little biased)! He has a heart so others-focused and loves to share his passion for Jesus and mental health with everyone around. He hopes to work in the field of mental health; however, his unstable health has been making this very challenging, as he has been forced to keep deferring and pulling out of his studies for the time being.
In 2016, his world was twisted all around when he was diagnosed with multiple, life-changing conditions. With the most impactful being Primary Sclerosing Cholangitis (a liver condition with no known cure and which will ultimately result in needing a liver transplant, after which the disease can develop again) and Ulcerative Colitis. However, it appears to be a list that is constantly changing and added to, with Acute Confusional Migraines, Chronic Fatigue, Complex Regional Pain Syndrome, Autism, and ADHD. And with the huge impact these conditions have had, and still have, came the mental health challenges, depression, anxiety, and medically induced PTSD to name a few.
This year has been one filled with many hospital admissions for weeks at a time, changing medications, surgical procedures, infections, unmanageable symptoms and the like. But it has been incredible to see how he’s used his experiences to share hope with others. To share “a hope beyond this,” which I’ll get into more in the other questions.
Q. How do you support your loved one when he is feeling down or struggling?
This is something I am still very much figuring out. I used to try and find the right words, the right Bible verse, the right card, the right gift...the right something. But time after time, that just didn’t work, and it wasn’t enough. I knew I couldn’t fix or control what he was going through, yet I tried, and I still try. I so desperately desire control. Yet at the same time, the idea of gaining it terrifies me. And this is why knowing God is in control is so important. Even though I have absolutely no idea why things keep happening the way they do, I know He has a plan for this that is far beyond my understanding. The act of silently sitting with Andrew in his suffering to physically remind him he isn’t alone, but also acknowledge that this situation is really hard, and just getting to spend time processing whatever has happened together has been something helpful to us. The action of sitting in silence so often speaks more than any words would. Also, getting to pray together in some really difficult moments has grown us so much in our relationship with God and also with each other. It’s helped us to look beyond now and what we can’t control, to the one is in control and who can see the bigger picture we can’t see.
Having a relationship where we are open with each other about everything (at least we try to be) is also helpful in the hard times chronic illness entails. I know Andrew really appreciates how I’ve taken an interest in his health and understanding what medications he takes, what triggers symptoms, what procedures he’s having done, and just being up-to-date and involved with what is happening. It means I can help out with organizing his weekly meds or his appointments - which are things I can do, and just take that little bit of the load off his shoulders so he can focus on getting through the day. Also, not doing it alone. It’s so easy to isolate yourself from friends and even family at times when going through difficult seasons, especially when communication becomes hard during the peak of a flare. It can feel easier to go through it alone, then pick up where you left off... or at least try too. But this just results in, well for us anyway, feeling more isolated. So for us, creating connections with friends in these times looks like me contacting friends or our Bible study to explain a bit of what’s happening when Andrew is unable to.
Q. What has surprised you the most about being on this journey with your loved one?
I think what surprised me most would be how watching someone be so sick so often never becomes normal. Because with most things, the more often something happens, the more normal it becomes. But not this. Andrew’s illnesses never become normal; they become familiar. We know how hospitals work, we know what medications they will likely try again, we know what might happen. But it is still so different every time, even when it’s seemingly the same. Pain never becomes easier to bare or to watch. Difficult, debilitating symptoms don’t become less impactful because they happen often. Missing weeks to months of study, church, meeting up with friends is never normal. And it’s hard that some people accept it as normal, then carry on like nothing happened when he’s back. It shouldn’t be accepted as normal. It isn’t normal to us. It never will be, and I don’t think it should be or is meant to be. It’s just familiar.
Q. What’s the biggest joy of walking through this journey with your loved one?
The biggest joy is definitely getting to grow closer together through this. We have been dating for just over two and a half years, but we’ve had the privilege of getting to know each other so deeply and seeing each other at some of the highest of highs and lowest of lows.
Our time of dating so far has been far from ordinary. Our first few dates were me visiting Andrew in hospital, going to appointments together, having smoothies in the hospital cafeteria with the “free” food vouchers (they really aren’t free, but they kind of feel like it! Haha!). His weeks upon weeks in bed gave us countless hours to talk about our lives, our faith, our deepest struggles, our goals and the like. Prior to meeting Andrew, I was an extremely quiet person in public, so it took me months to properly get to know anyone. So, being forced to have the deeper and harder conversations early was really hard, but it was so worth it. God has been so gracious to us in that.
It’s also been a joy to watch Andrew use the struggles and experiences he’s been through to shape his care, love, and communication with others struggling.
Q. How has experiencing life alongside your loved one as they navigate these challenges impacted you or even impacted your faith?
It has definitely been a hard, exhausting and painful journey at many times. But, these past couple years have opened my eyes to the pain and suffering of others in a new way. It’s so easy to fall into the trap of comparing. Especially comparing symptoms, number of diagnoses, and just everything. I really struggled, and still do at times, when people say they understand what Andrew is going through after they spend a night or two in hospital, for example. But suffering is suffering. And pain is pain. These can’t be put on a scale and compared between people. It isn’t accurate or helpful. God has helped me to see my need and desire for Him. I can’t do this life without Him. He’s helped me see I don’t want to either. There is so much pain and suffering all around me, and I am powerless to change any of it. But He isn’t. He not only loves me and comforts me now, but has saved me though sending His son to die for me and has a future for me with Him forever. God has given us a hope beyond this, and that is what gets me and Andrew through.
Q. How can those who are chronically ill best love and care for those in their lives who are wanting to support and be there for them?
I think for me, having times I can have honest conversations with Andrew about how I’m doing with what he’s going through or gone through is super important. Because it isn’t just him that’s gone through it, I’ve gone through it too, just from a different perspective or version of the same event. But as the one walking beside a chronic illness warrior, it can feel really hard to do this. As the one often helplessly watching him struggle in agonizing pain, intense itching, debilitating nausea, becoming overstimulated or just going through difficult symptoms, I have found myself falling into the trap of feeling like I have to be the one that ‘holds everything together.’ To be strong, calm, logical and rational. Now, these qualities are not bad in and of themselves, and at times, are very useful and helpful. But I can’t hold everything together. And that’s ok. I’m not meant to be able to. As I sit here and write this, it’s easy to say that but so very hard to remember, especially in the difficult times.
Q. As someone who is not chronically ill but is still walking through chronic illness with a loved one, how do you find hope in the challenges you face, and how does that hope impact your life?
This journey has continued to show me just how uncertain and unpredictable this life is. How I so desperately desire to have control over the unpredictability. How I need a hope in something that does have control. And how where I put that hope is so important. I’ve tried to put my hope in doctors and in health professionals, medications, medical trials and my own strength. But these have failed time and time again. Or they give false hope. Hope that lasts a few hours, or months, or even years, but isn’t guaranteed to stand the tests and trials that come. The only thing I can put my hope in that is unchanging is not an earthly thing or place. Rather it is the love, grace, plan and future that God has given us through Jesus. The One who gives us “a hope beyond this.” The one who understands our pain. The one who has saved us from ourselves. The one who has already planned our future.
Q. If you could leave our readers with anything, what would you want them to know?
This phrase has been so helpful for us: “Our tomorrow is unknown, but our future is known.”
Rather than focusing on what we don’t know, we have something to focus on that we do know, for certain.
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal” (2 Corinthians 4:18).
“Blessed be the God and Father of our Lord Jesus Christ! According to his great mercy, he has caused us to be born again to a living hope through the resurrection of Jesus Christ from the dead, to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, who by God’s power are being guarded through faith for a salvation ready to be revealed in the last time. In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honour at the revelation of Jesus Christ.Though you have not seen him, you love him. Though you do not now see him, you believe in him and rejoice with joy that is inexpressible and filled with glory, obtaining the outcome of your faith, the salvation of your souls” (1 Peter 1:3-9).
There is a hope beyond this. Whatever you’re going through, whatever your “this” is. There is a hope strong enough to get you through. I’m praying you find it too.
Written by: Laina Matocha
If you know Laina, you know that she is one of the courageous Fibro-Warriors in our Fam. You also might be interested to learn that Laina's a bit of a thrill-seeker (her bucket list includes swimming with Great White Sharks!!), but she also finds joy in the simple comforts of texting her BFF - her mama - every day. Laina's number one happy place is Paris, France, her guilty pleasure TV show is 90 Day Fiancé, and she's obsessed with tea! This girl is incredibly passionate about speaking up for those without a voice and hopes to one day open a beauty school for individuals who have been rescued from human trafficking. With a heart as sweet and passionate as Laina's, we are beyond excited to have her share this piece with y’all!
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