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TABLE of CONTENTS

Introduction 1 / SEE STORY 6 / What I N Syndrome 20 / The 10 B Clearing Things Up 30 / LO JOURNEY 34 / The Voic Vibes Only 51 / Getting in th / THE SECRET TO H the Bright Spots 66 / The Un Sleep 86 / Mantras for Getti

EING BOTH SIDES: ALLISON’S Never Saw Coming 8 / Invisible Woman BE Medical Terms You Need to Know 28 / OOKING FOR HARMONY: AMBER’S celess Songbird 38 / The BE Rewind 50 / Good he Groove 52 / Recipes in Tune With Your BE 60 HAPPINESS: EDNA’S CHOICE 64 / Only nselfish Truth About Self-Care 78 / The Power of ing Through the Bad Days 88 / SUSPECT BE 91

A real phenomenon: What it means for people with BE Imagine going into your favorite store one day, but the staff that normally fawns over you is now ignoring you in favor of the younger customers. At your favorite restaurant, the host seats the group of 20-somethings waiting behind you. It’s as if, suddenly, you’ve faded into the background of life. While this may sound like an alternate reality, according to a 2016 survey, 70% of respondents felt that women become “invisible” as they age. (Only 32% felt the same happened to men.) Starting at age 52, women reported being ignored by staff at restaurants and stores, and even being cut in line.

The BE rewind 5 things I wish I knew sooner Whether you are newly diagnosed with BE or have had it for a while, there is always more to learn about managing this condition. Here are a few things that Amber has learned over the years. 1. A BE diagnosis is not the be-all and end-all. I have something wrong with me, but I can still take care of myself and my body. I just need to be open to changing my goals and expectations. 2. There’s no one-size-fits-all when it comes to BE. Some people experience more mild symptoms and others, like me, may need to use oxygen at times. What I need changes often and may even vary on a day-to-day basis. 3. Younger people can develop BE. Although it’s more common in people older than me, you don’t have to be a certain age to have it. I was actually diagnosed in my late 30s. 4. Diet made a difference. When I transitioned to a vegan diet, I was able to clear up some of the complications I had with mucus. 5. It’s important to keep your doctor in the know. Every time things get bad or my symptoms get worse, I try to go to the doctor to have them check me out. I don’t try to self-manage my flares like a person may try to do with a cold.

Good vibes only 10 songs to de-funk a mood Having a bad day with BE or just looking to boost your mood? Check out the top song recommendations from Amber. Jazz Festival – Victory Soldier of Love – Sade Happy Feelin’s – Maze, Frankie Beverly Never Too Much – Luther Vandross Livin’ for the Weekend – The O’Jays So Fresh, So Clean* – Outkast Find a Way* – A Tribe Called Quest Fight Song – Rachel Platten What a Wonderful World – Louis Armstrong Here Comes the Sun – The Beatles *May include explicit or suggestive content. You can listen to these songs and more by opening the Spotify app on your phone and tapping the camera icon to scan this code:

Staying positive when every breath is a struggle

For Edna, life with chronic lung conditions started early. As a child, she had trouble keeping up with her friends without being out of breath. Breathlessness made her feel insecure, like she was living with a hidden disability. But Edna persevered, all the way through adolescence and into early adulthood. Until one day, almost overnight, she completely lost her breath. What her doctors initially thought might be a hole in her heart or a heart murmur brought on a new sensation that wasn’t too dissimilar from breathlessness: fear. Edna believed she’d end up like everyone else on her mother’s side of the family—a casualty of heart disease. But the diagnosis was asthma, and at 22 years old, Edna decided not to let the condition dampen her outlook. She chose to focus on the bright spots in life.

The science behind building healthy habits

Being a caregiver can be an incredibly rewarding experience. However, it can also be physically, emotionally, and mentally exhausting, and even more so if the caregiver is struggling with a chronic condition themselves. The positive emotions associated with caring for a loved one can often exist in the same breath as isolation and stress, and the risk of burnout among caregivers—whether by obligation or profession—is profound. It’s evenly split: According to a recent report looking at caregivers of people over 50, just over half of those polled feel like their role as a caregiver gives them a sense of purpose. The rest don’t feel the same way. For caregivers to do their job effectively, it is critical that self-care be practiced to help combat the stressors, anxiety, and burnout that are associated with caregiving. In short, to be a good caregiver, caregivers must take care of themselves.

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