Disclaimer: This post contains personal reflections on caregiving and mental health. It represents my individual experience and is not intended as professional advice. If you’re struggling, please seek support from a qualified healthcare provider.
The other day, someone asked me what I would plan if I could design the perfect day. No limitations. I opened my mouth to answer, sure I knew exactly what this day would look like, but nothing came out. My mind was blank.
I knew I wanted something to do with the outdoors, so I tried to think back on all of my favorite days and what I did. Still, nothing. How could I not know this? Then it hit me – I had trained myself not to think about this. For the past four years, I’ve been actively avoiding these thoughts. This is what happens when you have a spouse with chronic illness. At least, this is what happened to me.
I stumbled over my words and then got lost in my own head. Later, at home, a wave of sadness washed over me. Now that the floodgates had opened, I couldn’t stop thinking about all the things I would do on my perfect day:
- Take a long hike without worrying about fatigue
- Go out to eat without obsessing over ingredients
- Spend time with my family without the cloud of depression hanging over our heads and the fear of illness lurking around every corner
As these thoughts swirled, I started to realize how much overthinking and stress I experience every moment of every day. Is he feeling okay? What if there isn’t anything for him to eat? What if he yells at the kids, or me, because his life has changed so much?
I’m constantly thinking and worrying, every second of my life. I’ve written before about hypervigilance, but the truth is, I’m so used to being hypervigilant that I don’t even notice it anymore. And it’s exhausting.
Now I find myself back in the stages of grief. Not that I ever truly left, but I’m no longer in the acceptance stage I worked so hard to reach. Instead, I’m drowning in sadness and anger once again.
The realization of how much my life has changed, how much I’ve had to adapt and suppress my own desires, is overwhelming. I’ve become so focused on caregiving and managing our new reality that I’ve lost touch with my own dreams and needs.
As I sit here, overwhelmed by the weight of it all, I know I need to remind myself of some important truths. It’s hard to see them clearly right now, but I know they’re there:
- I don’t have to carry this burden alone. There are support systems out there – friends, family, support groups. It’s okay to lean on them.
- Even the smallest steps forward matter. In the world of chronic illness, progress isn’t always linear, but every tiny victory counts.
- Taking care of myself isn’t selfish; it’s necessary. I can’t pour from an empty cup.
- It’s okay to have bad days. The emotions I’m feeling are complex and valid. I don’t need to judge myself for struggling.
These reminders feel distant right now, almost like they belong to someone else. But I know they’re true, even if I can’t fully embrace them in this moment.
I think it’s time to go back to therapy. I need a space to process these feelings, to learn how to navigate this winding road with all its unexpected turns. I need help finding my way back to a place where these reminders feel real and actionable.
To anyone reading this who sees themselves in my words: you’re not alone. Your story matters. Your struggles are valid. And there’s no shame in seeking help when you need it. We’re all just doing our best to navigate this challenging journey.
How do you cope with the emotional toll of caregiving or chronic illness? What reminders do you hold onto during the darkest days? I’d love to hear your thoughts in the comments below.
Resources
Step-by-Step Guide to Finding the Right Therapist
25 Self-Care Activities You Can Do in 5 Minutes or Less
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