Facing Chronic Illness: The Loss, the Grief, and the Strength to Keep Going

When we become ill, and the illness doesn’t shift or respond to medical interventions, the first place we often turn is inward. We grieve not only the life we once had but the health we took for granted and all the activities we can no longer enjoy. Living with chronic pain or a chronic functional illness costs us so much more than the physical symptoms we endure day after day.

Yes, there are the obvious losses—like losing your job (I did), or watching some friendships fade away (mine did), and seeing your social life reduced to a mere fraction of what it once was. But the most painful losses are often invisible, just like the illness itself. Chronic illness changes our relationships—with our partners, spouses, children, parents, and friends. The expectations people have of us shrink, and our roles in their lives diminish.

So much we miss

For me, I lost 8 years of my life to chronic pain, and during that time, I slipped away from my son, who was just 11 when my pain started. He’s now at university, and just as I’m beginning to feel well again, I’m realizing how much of his childhood I missed. My illness also placed enormous pressure on my marriage, taking my husband and me to the brink more times than I can count. We survived, but there were many moments when I wasn’t sure we’d make it out together.

Watching my husband struggle with my illness was heart-wrenching. He had to stand by, helpless, as I disappeared into myself, unable to walk, sleeping for days on end, and curled up on the floor in agony at 3 a.m. No amount of nervous system regulation or mind-body work I did could ease his frustration. On some days, he would reach his breaking point and say things that made me feel like the most useless person alive. I hated him for it, and I hated myself even more.

Chronic illness creates a vacuum

And then there was my son. He realized, to my shame, that I didn’t have the space to handle his problems. He was being bullied, and I didn’t even know until much later. When I asked why he hadn’t told me, he said he didn’t want to add to my burden because I was always so ill. My heart shattered into a million pieces that day. How do you come to terms with that kind of failure? How do you forgive yourself for everything you’ve become?

The truth is, we don’t have a choice. We have to put one foot in front of the other and keep going. It’s the only way forward.

I’m not writing this to make anyone feel bad. If you’re suffering from chronic functional illness, then you already know what I’m talking about. But maybe you didn’t know that you’re not alone. You’re not the only one who feels this deep sense of loss, isolation, and emotional pain.

When I was at my worst, I felt so alone that I thought it might wash me away. I didn’t know there was a community of people who were going through the same things I was. But there are millions of us across the globe. In fact, according to the Centers for Disease Control and Prevention (CDC), as of 2018, 51.8% of Americans had at least one chronic condition, many of which involve chronic pain or invisible illnesses like fibromyalgia and chronic fatigue syndrome. And that’s just in the U.S.—globally, the numbers are staggering, with conditions like irritable bowel syndrome and migraines also adding to the burden of chronic illness.

This tells us something vital: You are not alone in your suffering, and your sense of loss is not unique. There is an entire community of people who understand the deep, invisible impacts of chronic illness—the heartbreak, the isolation, and the silent battle you fight every day.

Chronic illness is so much more than most people realize. It’s a silent war that rages inside us, unseen by others, but felt deeply by us. And while those who haven’t experienced it may not understand, those of us who have know every facet of this battle. We are warriors, fighting through every day.

So never feel like you’re walking this path alone. You are part of a community—a global family of warriors who get it. Together, we are stronger.

You are a warrior. I am a warrior. We are all doing the best we can. xx