The Secret Life of Chronic Illness

{Photo by Marie Dashkova for Scopio}

If you or someone close to you has a chronic illness, defined as “a health condition lasting a year or more, limiting daily activities and requiring ongoing medical attention,” you know what I mean by a secret life. If you don’t know, well, it’s because it’s a secret.

Most of us with chronic illness talk about our illness infrequently for reasons I’ll describe below. I have my highly productive life that most people see, then I have the life that only my spouse and daughter see, which, quite boringly,involves a lot of lying down. And when I show up for things like engagements and get-togethers, chores, or clergy duties, these activities are often preceded and followed by radical rest—which is what allows them to happen. Most people in my life only see the productive portions, not the preparation or recovery. I have become expert at doing things while feeling lousy! And more importantly, while not letting on.

Chronic Illness Can Be Isolating

The reason people with chronic illness have a secret life like the one I’ve described has to do with reactions of others. We’ve had so many experiences of people we love asking about our illness then responding in ways so dispiriting we decide it’s not worth sharing anymore. We recognize that our loved ones love us and care, so I say this not in judgement but in recognition of the difficulty of sharing something complex. When confronted with the complexity of chronic illness, most people either glaze over in boredom, suggest they might know the answer (“maybe you should try taking/doing/seeing…”), act incredulous, or immediately forget what we have said. This is especially true when one has chronic illnesses that are complicated and hard to explain.

Therefore, having a chronic illness can mean living every minute of every day with something life-altering that few people can relate to. This is isolating and can be lonely, especially because feeling poorly curtails social engagement.

{Photo by Marie Dashkova for Scopio}

Chronic Illness is Economically Costly

Finding ways to survive with chronic illness requires creativity. Tragically, this creativity is not available to everyone. The ability to strategize ways to create income that are compatible with limited physical abilities can be a privilege. For fifteen years, I’ve been privileged with flexible jobs I mostly do with my brain and hands while my body rests. Many people do not have this freedom. This is why people with chronic illness are at greater risk of things like housing and food insecurity, and of pushing their bodies past thresholds of healthfulness and proper care. This can lead to drug addiction (chronic pain being at the root of the opioid crisis) and decreased life expectancy.

Even when people have ways to strategize economic survival, these strategies often limit one’s choices dramatically. Of course, we all have limits. Simply put, mine may be oriented around the physical more than they are for others.

Chronic Illness Affects Self-Esteem

Being forced to frequently say “No, I cannot do that” because, essentially, one would feel like shite if one did that, can be demoralizing and can affect one’s self-esteem. On the other hand, it often propels those of us with chronic illness to accentuate the positive, so to speak. Amid the sea of things we cannot do, we find islands where we can thrive. And in those areas, we put ourselves forward with gusto. Yet often we find our way to these islands only after years of struggle, failure, and worsening illness that have taken a toll on our self-esteem.

Chronic Illness Affects Relationships

Just as people with chronic illness often struggle to find income sources and arenas of achievement that work for us, so we often struggle to find relationships with people who accept us and the unique contours of our lives. Living with or being married to someone who does not believe we are ill because many chronic illnesses cause invisible symptoms (fatigue, pain, cognitive difficulties, less-visible allergic reactions, etc.), can lead to conflicts that are detrimental to relationships. For example, when one partner knows they need to rest to survive and the other partner defines the resting as laziness, the resulting impasse can be insurmountable. I haven’t even mentioned the strain of high healthcare costs for those with chronic illness.

All told, chronic illnesses are often endured in secret and require a great deal of strength and creativity. But when a loving partner and loving family/friends are willing to learn about the experience and respond with understanding and compassion, the potential for deep sharing is also available.

If you liked this article, please leave me a comment below; I am interested in your perspective. To support my writing, please subscribe and share with a friend!

---

Wren, winner of a 2022 Independent Publishers Award Bronze Medal

Winner of the 2022 Independent Publisher Awards Bronze Medal for Regional Fiction; Finalist for the 2022 National Indie Excellence Awards. (2021) Paperback publication of Wren , a novel. “Insightful novel tackles questions of parenthood, marriage, and friendship with finesse and empathy … with striking descriptions of Oregon topography.” —Kirkus Reviews (2018) Audiobook publication of Wren.