5 Moments in My Chronic Illness Journey That Changed Me
We all have moments in our journey that change us, for better or for worse. Maybe these moments grow us or educate us on the ways of the world. Perhaps, they teach us that life is painful or people are not to be trusted. Some moments might teach us there is beauty and living yet to come. Others still, might teach us that we are stronger, wiser than we knew, or the opposite, we need others more than we’d like to admit.
We can collect these moments like my daughter collects treasures on a nature walk. We can see their beauty and their value, pick them up and place them in our pockets and go on with our day. But some of these moments are too large to fit in our pockets. These are the moments that change our lives forever. When we look back over the roadmap of our lives, we see these turns in the road flagged. We say, “Right there! That was the moment when I knew, when I learned, when I realized, when I forgave.”
Today, I share five of these moments from my personal journey with chronic illness. I’d love to hear about some of these moments of your life, your journey with chronic illness as well.
- The arrival of the wheelchair: What I did know: Something was very, very wrong. Walking was an arduous, exhausting process which required the assistance of two people and still left one leg dragging behind me. What I did not know: Why is was occurring, how to make it stop, or that it was time for a wheelchair. However, my precious friend Nicole handled this moment with such grace. For days, I’d been dragging one leg behind me and leaning the other half of my body on my husband to get to and from the restroom. At night, I tried to drag my body across the ground on my stomach, as to not have to wake my husband. Nicole made one phone call to her husband in which she asked him to bring over his wheelchair because, “Stacey couldn’t walk.” And then it appeared. I loved her for bringing it because the body dragging was exhausting and painful. I could never adequately express how much I hated traversing public outings in the chair, however. The stares, the questioning, doubtful, penetrating glances, the public restroom obstacle courses, they were all pure misery. And the chair, what did it say about me? About the rest of my life? Its arrival changed me, the way I saw myself, my future, my worth and the seriousness of my ailments.
- “Stress and Anxiety”: I was still in a wheelchair, unable to button my own sweater when the first neurologist I saw claimed all of my symptoms were the result of “stress and anxiety.” I was angry, ashamed and powerless. You see, despite my overwhelming desire to flee the room, I couldn’t. I wanted away from this man who was supposed to help me but instead spoke to me with disgust and contempt. My husband calmly proceeded to ask questions. I didn’t want to hear another word from this man’s mouth, but I was powerless to leave on my own. That day, I learn to doubt myself, to be ashamed of myself. I learned that I was a burden, untrustworthy. The doctor talked to my husband without so much as making eye contact with me. I learned that I was less than a dog. It took years to unlearn the things I learned in the span of twenty minutes from a man we paid to help me.
- Diagnosis Day: There were four symptom-filled years in between the day I sat in a wheelchair next to my husband while he calmly asked follow-up questions from a man who refused to look at me and the day I sat in front of a kind, wise, sought after expert who finally spoke answers to all of my questions. I hadn’t expected answers that day, but I had hoped for some measure of relief. I was floored when he offered both. I couldn’t keep up with him as he spouted off answer after answer, test results and diagnoses. What I learned that day was that kindness and goodness still existed. That my inner voice which had been shouting so loudly all along was trustworthy after all. I learned even the coldest winters eventually come to an end.
- “Anytime day or night”: Once I began my treatment under the care of one of my favorite human beings of all time, I found that not only was my body healing but my heart as well. Each time I went in, he would instruct me to “call him anytime day or night” should my symptoms worsen. After being passed from doctor to doctor with little more than a cursory glance and a mumbled, “Here, try these pills” here I learned my pain, my story mattered. I had underestimated how powerful this was. So I want to pause here for a moment. Maybe today you are experiencing a tremendous amount of pain, perhaps physical or perhaps emotional. Perhaps, the people in your world, or your life experiences have taught you that your pain, your story doesn’t matter. I want to tell you, that’s a lie. You matter. You pain matters. Your story matters. Let this be the place you mark, where your story takes a turn and your relearn how very precious you are.
- IVIG Approval: I remember one of the last denial letters I got from the insurance company. It was the day before my husband and I went away overnight for a quick anniversary celebration. I was crushed. Sick and tired of being sick and tired I couldn’t understand how they could have multiple doctors telling them my immune system was incomplete and I needed this treatment and yet repeatedly deny me access to it. My infections were on top of one another, often multiple at a time, with few breaks in between. Did the insurance company not realize what opportunity for an improved quality of life they were taking away from me? Did they not care? The day my doctor had his “peer to peer” review call with a doctor from the insurance company and my treatment was finally approved felt like winning a war. That day, I learned there are still people who will fight on your behalf, and that I was worth fighting for.
So what about you? What moments have changed you? What did you learn from them?