by Colleen L. Geary, PhD, The University of Alabama
The looks I get when I step out of my car in accessible spaces are hard to miss. I’ve even had someone tell me that I don’t look disabled, to which I simply reply, “Thank you!” Invisible disabilities are, by name, not seen from the outside, but I can promise you, those of us who live with them feel their effects every single day. They challenge our assumptions about what illness looks like, as many people navigate pain, limitations, and uncertainty that cannot be seen from the outside.
I first injured my lower back in my early 20s. Over the next two decades, a series of spinal problems progressed from chronic pain to nerve damage that affected both my left arm and leg and my mobility. By my late 30s, I was using a cane and constantly adapting to a body that could no longer do the things I once took for granted. Despite the pain, I continued to work and exercise as much as I could. Doing both gave a sense of purpose to my day and helped me keep my mind off the pain.
It’s difficult for someone who has never experienced a chronic illness to understand just how much it impacts and reshapes your daily life. Tasks I once completed without thinking- opening heavy doors, standing in line, playing with my dogs, or lecturing in the classroom- now require planning and adaptation. Even grading papers or sitting at my computer for long periods can have physical consequences.
A friend and colleague who uses a wheelchair expressed perfectly how difficult it must be for me to live with an invisible illness. While she knows what each day in her chair will look like, I never know from one day to the next what my physical capabilities will be. And she’s right. I constantly need to adjust my body and my plans to prevent pain from setting in by modifying how and how much I move, rest, sleep, socialize, travel, work, and relax. Over the years, I have tried countless treatments in pursuit of relief and mobility, from injections and medications to physical therapy. Some have been more effective than others, but all have helped me keep moving forward.
When people ask me how I’m doing, I always smile through the pain and say that “even though my spine may have given up on life, my spirit hasn’t!” But that is not always the case. I have wanted to give up too many times to count. At times, I’ve been exceptionally lonely, as has my husband, who has patiently supported me, even when I was at my worst and couldn’t get out of bed for days at a time. His daily presence and support have been exactly what I needed as I’ve moved through the stages of grief. Ignoring my grief was the worst idea, as I desperately fought the idea that I wouldn’t be like this forever, but moving into acceptance has allowed me to find a new life with this broken but beautifully strong body.
That realization truly happened in the spring of last year, after I learned I would need yet another cervical spine surgery. My best friend said she hoped this surgery would finally allow me to have days completely free of pain, rather than days when my pain was simply being kept at bay. In that moment, I decided that, instead of making daily adjustments here and there, I needed to try an entirely different approach. I realized I needed to slow down, to focus on myself, and to learn to nurture rather than continue to push my body. I needed to genuinely prioritize my health and wellness.
Unlike my behavior following my past injuries and surgeries, following my third surgery, I filed FMLA and took leave from work. I chose to give myself the time I have desperately needed to truly heal. I also decided to focus on a holistic approach to healing. For the first time, I committed fully to recovery: physical therapy, nutrition counseling, psychological support, rest, and a deliberate focus on my overall well-being.
During that time, I learned to listen to my body, something that proved difficult after years of ignoring pain and pushing forward no matter how much I hurt. Having never truly rested before, I have learned that rest isn’t a waste of time but a purposeful act that allows the body to recover. Over the past 18 months, I have made remarkable progress. I am moving better than I have in years, experiencing less pain, and regaining strength and function I once feared I’d lost forever. Recently, I have even been able to walk short distances without my cane!
I used to get upset thinking about how hard my life was, how I might never be able to move exactly as I used to, and how different my life is compared to how I imagined it would be. But now I smile when I think about how far I’ve come, how resilient and strong I am, and what wonderful lessons I have learned along the way during this difficult journey. I have learned to slow down and enjoy the quiet, especially when I’m resting on one of my numerous heating pads with my pugs flanking me on the right and left. I have learned that it’s okay to both ask for and allow others to help me, both for my benefit and to give them the opportunity to show me that they care about me. And I’ve come to appreciate the importance of connection, encouragement, compassion, and hugs, especially on difficult days.
Living with a chronic illness has taught me to try again, no matter how many times it takes; to show myself compassion; and to prioritize myself, my health, and my wellness. Because while invisible disabilities may not be obvious to those around us, understanding and grace can make a tremendous difference.