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Patient InsiderHi,I'm LynnManaging chronic hives can be hard.Here’s how I do it.

A portrait of Lynn Julian Crisci.

I was “the most difficult baby”

That’s what my mom said. As a newborn, I had painful red welts on my body. I was reacting to my own urine – it was burning my skin. The doctors didn’t know what it was. Their advice? Don’t use diapers and put some ointment on it. Nothing helped. Looking back, I think it was hives. As a teen, these painful, itchy red bumps appeared on my face – where everyone could see. It was so hard. I did allergy testing. And they just found basic stuff: "You're allergic to these animals. Get rid of anything with feathers or fur." That kind of thing.
When it's on your face, everyone can see your truth.

My diagnosis took decades

I lived this way for a long time, not knowing the cause or what to do about it. And then the Boston Marathon happened.

In 2013, I became an injured survivor of the Boston Marathon bombing. My symptoms got much, much worse after that. I don't know if it was from the stress. Something else?

Five years later, I was finally diagnosed with mast cell activation disorder. The doctors said that this was the source of my chronic hives.

Finding the right doctor was key to getting my diagnosis. I saw multiple dermatologists until I got one that took me seriously.

That's one tip I always give people: go to the chronic hives community or people in your area and ask, “Who do you see? Do you like your doctor? Are they taking new patients?" Because they've already done their homework. They’ve already found somebody who's good.

It's a very intimate relationship, especially with a dermatologist. They’ll be examining whatever part of your body is breaking out, so you have to get along with them. You have to trust that person. If you're not comfortable with them – I mean “naked comfortable” – then get another doctor.

You're going to have an outbreak. You're going to have a flare-up. You're going to need their help. Get that relationship established while you're well. That way when you have a flare, you already know, "My doctor has my back. It's going to be okay."

Bring “receipts” to your appointment

If you can, take photos to show your doctor, so you can say, “My last flare was on this date. Here's what it looked like.” My treatment has improved tremendously since I started showing up with photos, or what I call “receipts.”

I also bring a list of three to five things I want to discuss. I keep my list in the notes section of my phone’s Google calendar. If I get a test result back and my appointment isn't for three more months, I’ll go into my notes and add the test result. That way I don’t have to try to remember it later.

Written lists on a paper with a speech bubble showing a check mark.

Tracking triggers

You have to write it all down. I recommend keeping a diary – that helped me figure out what my triggers are. I would never have figured out that celery was one of mine if I hadn't kept a diary of each breakout. Even things like friction from clothing can throw me into a flare.

Think of it this way: when you're putting out a fire, you have to aim the fire extinguisher at the base of the fire. You have to get to the root cause. If you’re not addressing the root cause, you’re not helping yourself nearly as much as you could. That’s why tracking triggers is so important.

For me, I have to read every little ingredient. Even products that claim to be “clean” may not be. This is especially true for makeup and beauty products.

Keeping a diary can help with tracking therapies and treatments, too. For example, I use red light therapy most nights as a preventative. I haven't had hives on my chest or back in years.

Four hands hold up a heart.

Find your tribe

It can be tough to feel confident when living with chronic hives. I used to be an actress. But now I don't sign up for auditions because I can't guarantee that something won't happen three months from now when you want to film. And that makes me nervous. And guess what happens when you get stressed?

My advice for anyone not feeling confident? Find your tribe. These are the people who get it. The people who will never dismiss your reality and tell you, "Oh, it's not that bad." When you find your tribe, you’ll see you're not alone anymore.

This is my body. I decide what goes in it and on it.
A portrait of Lynn Julian Crisci.

My Reading List

You're not alone on this journey. Here are some articles that may help.

Oh, and follow more of my story.