Some carry their struggles privately. I admire the fact that people can be quiet in their struggle. But I do not “suffer silently.” I am someone who will tell their story and tell it loudly. Ultimately, my goal is to show people that they are not alone and that — with proper support — we can thrive with chronic illness.
I have cystic fibrosis and I did not know that for most of my life. Growing up, I struggled to keep up physically with other children, but I thought I was just out of shape. Throughout my childhood, I was diagnosed with various autoimmune and chronic illnesses — Hashimoto’s, PCOS, Type 1 diabetes. But there was not much digging into the causes behind these random diagnoses.
I successfully graduated from undergrad, with the occasional flare up or bad blood sugar days. It was in grad school when everything changed. During that time, I was hospitalized roughly every 3-6 months from a negligible illness (e.g., ear infection, UTI, etc.). At one point, it got so bad I was put in the ICU. After developing some digestive issues, I went to a GI specialist who told me they suspected I had cystic fibrosis. I was then sent to a pulmonologist where I got a sweat test that confirmed a diagnosis of cystic fibrosis. In fact, my CFTR mutations are so rare they are unknown.
To tell you I was stunned was an understatement. My family has walked through the world of genetic disorders before, but receiving a CF diagnosis in adulthood was incredibly hard. This is where my story turns around, though. I have never felt more supported and loved than I did while trying to adjust to such big news. People came out of the woodwork and talked to me about their experiences with chronic illnesses and rare disorders, including folks with cystic fibrosis. I had people praying for me and checking in on me constantly to see if I was OK. It was honestly the best kind of overwhelming, where you are bombarded with support and love.
If you are looking for ways to support your loved ones during their struggles a with chronic illness, here are a few ways I’ve found to be super helpful:
- Show up. Being sick can be incredibly isolating, and I think we all gained sympathy for our chronically ill brothers and sisters throughout the past few years of sheltering in place and social distancing. In seminary, we learned in our crisis ministry class about this idea of “ministry of presence.” It's a concept where those supporting a loved one do not need to have any special words, but rather the act of just being there is enough for a person to feel loved and provided for.
- Offer to go with them to appointments. In complex cases like mine, you are often hearing a team of really smart people tell you a lot of overwhelming things about your current state and what to expect. When we have a partner with us at doctor’s appointments, they can help us remember things to bring up with the doctor, hold our hand during blood draws, and support us while we advocate for ourselves.
- Invite, invite, invite. When a person has a chronic illness, participating in activities can be a challenge. Because of this, it can be tempting to leave them out of plans. As I’ve already stated, being sick can be incredibly isolating and we notice when we are being left out. Be intentional with your chronically ill friends — reach out and make plans. Even if you need to change plans or put accommodations into place, it is important to include everyone.
- Learn! Use reputable sources to do your research on the diagnosis that your loved one has. By having a knowledgeable support circle, the mental load is greatly reduced for the chronically ill. Doing the smallest bit of research shows that you care and goes a long way.
I come to you saying that the support I received from my community saved my life. Throughout my diagnosis journey, I have been working in churches.
These communities taught me to be proud of my story. These people have taught me to be proud of the things that I have overcome. Between my community of support and my faith, I have learned what it means to be resilient. I have learned the value of support.
It’s been said that it takes a village to raise a child, but I think it also takes a village to live. My prayer is that others in the CF world will find a group of friends that will fight with — and alongside — them. Together, we truly are stronger.
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