My spouse has had Long COVID for almost 5 years. The daily routine we used to follow is a memory for both of us. We were an active couple planning for our future, surrounded by family and friends. We were looking forward to travelling after we both retired.
The Hidden Toll
I’ve been her primary caregiver through Long COVID, watching her physical limitations, fatigue that is just crushing, and the cognitive decline that has masked the brilliant woman I married. It’s not just her decline that’s hard to see. It’s having to go through this journey almost alone. We used to have a social circle and our family members who should have been our strongest supporters. They have all turned a blind eye to us. It feels like we don’t even exist to them.
A Caregiver’s Reality
You rarely hear about the challenges of the role of caregiver or the emotional and physical demands that come with it. My own health has begun to show wear and tear, and I now have Long COVID symptoms. There is no respite from this role, not even for a few hours, with no family member willing to give me a break.
Finding Community in the Virtual World
Our salvation has come from an unexpected source, our online Long COVID community. These virtual friends from all over the globe have become our lifeline. They understand without explanation, offer support without judgment, and share their own struggles and triumphs. Through our screens and keyboards, we’ve found the empathy and understanding the physical world has denied us.
It’s painful that there are no real-world connections, but our virtual family has shown us that genuine support doesn’t require physical presence. Every message, every shared experience, and every virtual hug reminds us that we’re not alone in this fight. While our families have chosen to distance themselves from us, our online community has chosen to stand with us, proving that sometimes the strongest bonds are formed not by shared DNA but by shared struggle.
As both a caregiver and now potentially a Long COVID patient myself, I’ve learned that strength isn’t about carrying on alone. It is about finding strength in support, even when it comes in unexpected forms, like through a computer. Our story is one of loss but also a story of finding connection in the most unexpected places.
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