The Burden of Explanation vs. the Relief of Community

Living with chronic hives can be an extremely difficult and isolating experience.

The exhaustion of explaining my symptoms

The mental load and the exhaustion of explaining to others the severity of living hives can be overwhelming. Even when people are trying to understand, it can take a heavy emotional toll to take on the emotional labor of getting them to comprehend the full experience of living with chronic hives.

In general, people tend to discredit skin conditions. They usually don’t comprehend how life-altering or even disabling they can be. It’s hard for them to conceptualize that skin conditions are chronic. People tend to relate things to their own experiences, so it can be difficult to communicate if they’ve never experienced anything similar.

Amplifying what I can't do

Oftentimes, I try to explain my chronic hives in a way that focuses on what I can’t do.

• I can't wear certain clothes because they are too painful.
• I can't use the bedding at a hotel, so I always bring my own.
• I can't easily purchase personal hygiene products like shampoo and body wash.
• I can't use all soap, so I have to carry my own soap when I leave the house.

This is the most effective way I’ve found to communicate my struggles with chronic hives to those who don’t live with chronic hives.

Finding common ground with others who don't have hives

If they ever had hives, even for a moment, I try to lean into that. Maybe they used a laundry detergent that didn’t agree with their skin or a product that caused issues. Maybe they’ve experienced an allergic reaction? Those are all experiences I can use to help them better understand.

How do I make people understand? It’s a question that’s been on my mind for a long time, involving a lot of trial and error. It can leave me feeling misunderstood to keep explaining, especially when people are dismissive.

The freedom of being understood

Fortunately, I’ve had the wonderful chance via social media to connect with others living with chronic hives.

Within the chronic hives community, I’m simply understood in my experiences without even trying. It’s such a freeing feeling to be understood without explanation. There is something so special and unique about being in community with people who share a mutual understanding of believing and a shared history of certain experiences.

For a moment, this experience erases all the feelings of isolation due to being misunderstood.
I take that feeling back into my daily life as I know that I can always reach out to my community and to some of my closest friends who know exactly what I mean to convey about my chronic hives frustrations. I get to turn to those who don’t need an explanation which makes all the difference!

How to find your community

If you’re feeling overwhelmed, misunderstood, or a sort of grief about living with chronic hives, I highly encourage you to reach out within the chronic hives community!

Personally I’ve met the most amazing people via social media on X (formerly Twitter), Instagram, and TikTok.

I hope that you also find your people within this community!