Living With an Invisible Illness: The Gifts That Come From the Battles Unseen

In 2005, I went from healthy, active, social, and adventurous, to ill, isolated, embarrassed, and wrecked. My strong, healthy, never-broken-a-bone-or-had-stitches body began failing me and the diagnosis was “Ulcerative Pancolitis.” 

I had never before heard these words, but the complexity of this newly introduced term seemed to match the seriousness of the symptoms wreaking havoc on my life. Migraines took over as weakness and pain felt like a blanket suffocating every part of me. My anxiety skyrocketed as my urgent-driven bathroom trips exceeded 20 times a day. Nutrients and fluids left my body at a pace I could not keep up with. My tan and toned skin became drab and nearly ghost-like. The clothes I had worn for years suddenly did not fit as my weight erratically jumped up and down in a 30-pound range from week to week.

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After nearly a decade of doctors dismissing my questions about the gut and brain connection, our immune system’s microbiome, and forward-facing trauma studies –  I found myself in the hospital once again, weak and unable to care for myself. I remember both my husband and mother-in-law grieving the sight of me. I looked around as I lay in that awkward hospital bed, hooked to wires with bells and buzzers calling incessantly to those outside my door. 

Amidst the noise, I remember the still, small voice gently saying, “it is time.” I grieved as I knew it was time to accept the surgery I had fought feverishly against the previous nine years. I was too weak to fight for any alternative option, so two months later, my large intestine was removed in its entirety. From that moment until the day Jesus takes me home, my small intestine will remain routed out of my stomach and into a colostomy bag. Sexy, right?

Was this the answer I had prayed for? Not even close.

Desired? Nope, not at all.

Necessary to live? Absolutely, at the time and the severity of my illness – it was.

I have learned over this journey that: 

Invisible battles look different for everyone

Over the past 15 years, I have had the honor to meet many others who struggle with health battles, some similar and many different than my own. Comparing difficulty between struggles is not productive, but extending empathy and increasing understanding can be very impactful. I have significantly grown simply by knowing that we all have our bad days. Over time, with increased trust, a place to share stories and ask for help has been established. Knowing that I am not the only one on this journey is helpful when I am engulfed with the emotional illusion of loneliness.

Not every battle has a clear beginning and end

Just when I think I’m feeling great, there are days I’m weak, angry, or sad. Similarly, after a rough day or two, I often feel spunky and ready to take on the world. As those who are warriors against invisible illness have also shared, it can be life-giving to acknowledge and accept that there are days to fight, periods of rest, erratic stages of grief and triumph, and an ever-shifting relationship with our diagnoses. Change is okay, for us all.

Finding healthy tools to navigate the marathon is essential

We have the option to find the routines, resources, personalities, and processes helpful for us. I’ve learned to adjust as necessary and aim toward healthy growth. I like to block off time for activities like a thrift shop visit, getting my hair done, and sitting outside in the sunshine. It’s also important for me to find time to sit with the people I respect and trust the most; it gets me out of my head and balances my thought direction and emotional fluctuations.

Healthy boundaries matter

I’ve worked to develop clear lines around the amount and types of information I share with others regarding my journey. The mask I put up is not always bad. It’s often up until I navigate the level to which this person accepts me for me. I actively seek to keep those with great character traits in my primary, secondary, and tertiary social circles in order to lessen the drain I feel when battling negativity and gossip.

Givers gain

I believe God often places people in our lives to show off his love and generosity. By establishing a faith community of trusted loved ones, we learn to be served and comforted in a way I see as both biblical and beneficial. Learning to accept help is a journey — I notice that denying someone an opportunity to serve can take away the blessing they receive through that act of kindness.

Appreciate the mess 

Life is messy. Developing a practice of gratitude within the chaos has been significantly valuable in my ability to process, heal, and mature from even the most traumatic of circumstances. 

Our growth is not easy, smooth, nor clearly marked out on a map – especially when the battle is unable to be seen, but oh the beauty and strength our mess can bring!

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