When my husband’s chronic illness went into remission, I thought our struggles were over. I couldn’t have been more wrong. Don’t get me wrong – remission was what we had been fighting for, praying for, desperately hoping would happen. But no one prepared us for the complex emotions and challenges that came with it.
And the powerful emotions that it brought when it came back.
The False Hope of a “Cure”
Growing up, I always associated the word “remission” with the end of an illness. It was a word of hope, of finality. What I didn’t realize was that remission was just a temporary relief from the illness, a respite that could end at any moment.
When my husband started feeling better after the first year and resumed life as it was before he got sick, I thought we were done. The illness was behind us, a chapter closed. I felt an overwhelming sense of relief, convinced that it wasn’t truly “chronic” after all.
I remember sitting in the doctor’s office, hearing them say it was most likely in remission. In my mind, I translated this differently. I thought the doctors just didn’t want to admit they had gotten the initial diagnosis wrong. Surely, this “remission” was their way of saving face while acknowledging that my husband was better. In my heart, I was certain: my husband was cured, the doctors had been mistaken, and we had just dodged a bullet.
We celebrated our good fortune, making plans and dreaming of a future free from the shadow of illness. I remember the first time we went on a hike (7 miles!) after months of being housebound – the sun on our faces, the crunch of leaves under our feet. It felt like a miracle, a confirmation that we had left the illness behind for good.
But then, without warning, it came back. And it hit with a vengeance.
The return of symptoms felt like being hit with a ton of bricks. I was in denial at first, desperately hoping it was just some other fleeting illness. But as the days wore on and the symptoms intensified, the harsh reality set in. This wasn’t a mistake or a temporary setback. This was the chronic illness reasserting itself, reminding us of its permanent presence in our lives.
Accepting this truth was, in many ways, even harder than the initial diagnosis. We had tasted freedom, had allowed ourselves to believe in a future without chronic illness. Having that hope stripped away left us reeling.
Now, I found myself longing for another remission, but with a new understanding. I quickly learned that for those of us living with a chronically ill spouse, remission is a complex experience – a double-edged sword that cuts both ways. It offers relief and hope, yes, but also anxiety and uncertainty. Each period of remission became both a blessing and a reminder of the unpredictable nature of our journey.
The Rollercoaster of Remission
These days, if remission makes an appearance, it feels different. It’s no longer a cause for unbridled celebration, but rather a period of cautious optimism tinged with anxiety. Every good day comes with the unspoken question: “How long will this last?”
I find myself hypervigilant, watching for any sign that might indicate a return of symptoms. Every twinge, every moment of fatigue sends my mind racing. It’s exhausting, but the alternative – being caught off guard again – seems even worse.
Yet, there are moments of joy too. When my husband has a good day, when we can do something we haven’t been able to do in months, it feels like a gift. We’ve learned to cherish these moments, to live in them fully, even as we brace ourselves for what might come next.
The Guilt of Good Health
“The endless, traumatic cycle of fighting symptoms, dealing with healthcare professionals who may not believe patients are sick, and the constant dread over symptoms returning may lead to post-traumatic stress disorder (PTSD) or other traumatic stress disorders. Some patients who reach remission might even experience a sense of guilt, known as “survivor’s guilt,” for regaining their health, while others they know continue to struggle. ”
As we settled into our new normal, an unexpected emotion crept in: guilt. While we were enjoying our respite from illness, many of our friends in the chronic illness community were still struggling. How could I celebrate our good fortune when others were still suffering?
I remember logging onto the support group forums we’d frequented during the worst of my husband’s illness. The posts about pain, about failed treatments, about the daily struggles of chronic illness – they were all still there. But now, I felt like an outsider. How could I offer support when I could no longer relate to their current struggles?
This guilt extended to my relationship with my husband as well. On days when he was feeling particularly good, I’d catch myself wondering if I was being supportive enough, if I was allowing him to fully embrace his improved health. Was I holding him back with my constant worry?
Redefining Our Identity
Perhaps the most challenging aspect of remission was redefining our identity – both as individuals and as a couple. For so long, we had been “the couple dealing with chronic illness.” It had shaped our routines, our conversations, our very way of life. Now, we had to figure out who we were without that constant presence.
I found myself struggling with simple things, like how to answer when people asked how we were doing. “We’re good” felt like an understatement, but launching into an explanation about remission and its complexities often led to confused looks or well-meaning but misguided comments about how we must be “cured” now.
My husband, too, grappled with this shift in identity. After a year of carefully managing his health, he now had to learn how to trust his body again. There were days when he pushed himself too hard, reveling in his newfound energy, only to crash afterwards – a stark reminder that while we were in a better place, we weren’t “cured.”
A Message to Healthcare Providers
Through this journey, I’ve realized how crucial it is for healthcare providers to address the psychological aspects of remission and relapse. We need doctors who can help us navigate the emotional rollercoaster of chronic illness – not just during active phases, but also during remission.
We need guidance on how to enjoy improved health without falling into the trap of false hope. We need strategies for coping with the anxiety of potential relapse without letting it overshadow the good times.
Most importantly, we need acknowledgment that our fears and struggles during remission are valid. That it’s okay to be happy and worried at the same time. That adjusting to the unpredictable nature of chronic illness is an ongoing process.
Embracing the Uncertainty
Living with chronic illness – even in remission – means embracing uncertainty. It means finding joy in the present moment while acknowledging that tomorrow might bring challenges. It means celebrating good health without taking it for granted.
We’re learning to redefine what “normal” means for us. To create a life that can flex and adapt to the ebbs and flows of chronic illness. To find strength not in the absence of fear, but in our ability to keep moving forward despite it.
This is our new normal, and day by day, we’re learning to navigate it. The journey of chronic illness doesn’t end with remission – it simply takes a new, often unpredictable path. And we’re ready to walk it, wherever it may lead, always hoping for the best but prepared for whatever comes our way.
In the end, remission taught us a powerful lesson: life with chronic illness is not about waiting for the storm to pass, but about learning to dance in the rain. Sometimes it’s a slow, careful waltz; other times, it’s a joyful, energetic jig. But always, always, it’s about moving forward, together, one step at a time.
Resources:
Well Spouse Association: Support for Spousal Caregivers
Very Well Mind: How to Cope when Your Spouse Has a Chronic Illness
Caregiver Anxiety: What it is, What to Look for, and How to Manage it
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