When living with sarcoidosis, it helps to be ‘Simply More’

My mom visited me at the hospital during my latest infusion and, unsurprisingly, did not come empty-handed. She brought lunch and a few tchotchkes she’d picked up recently. Among them was a decal that read, “And one day, the girl with the books became the woman writing them.”

It made me a little verklempt. She’s so proud of me for publishing “Kaleidoscope: Rare Disease Stories” two years ago, and I’ve been trying to start working on a follow-up ever since. I know what I want the next book to be, but I haven’t been able to find the time, energy, or focus to make it happen yet.

It’s one of the frustrating ironies of being disabled. I can’t work anymore, so I’ve got plenty of time on my hands. But living with sarcoidosis is a full-time job in itself, so my time is filled with medical appointments, medication management, and symptoms that never take a day off.

So I stepped back, reverting to, simply, “the girl with the books.” I’ve got dozens of them waiting on my Kindle, and I seem to go through phases: I don’t pick it up for months at a time, and then I can’t put it down for just as long. A few days ago, I picked it up again.

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One book that called out to me was Cynthia Erivo’s “Simply More: A Book for Anyone Who Has Been Told They’re Too Much.” After her incredible performance as Elphaba in “Wicked” resonated so strongly with me, I started watching everything she was in, and when I learned about her book, it was an automatic download.

I have been called “too much” of many things, but Erivo’s reflection comforted me.

“I learned that the things we get into trouble for as children—the toos—are early signs of our greatest adult strengths. The child who asks too many questions? She becomes someone who seeks to understand and solve problems. The one who’s too talkative? She uses her voice to speak up for herself and others.”

That was me as a child, and this was validation. “Because I said so” wasn’t a good enough answer from parents or teachers then, and it’s not a good enough answer from doctors now. With a disease like sarcoidosis, we must ask questions about our symptoms, test results, and treatment options. And when we don’t get the answers we need, we have to keep asking, keep searching.

As we go through each stage, from pre-diagnosis to a lifetime of disease management, we must continually speak up for ourselves. I spent four years being dismissed by doctors because they could not see my pain, fatigue, or dizziness. They suggested that I was “just depressed,” but I knew it was more than that. Undeterred, I continued speaking up, asking questions, and seeking to understand what was happening to me.

When I developed new skin lesions and joint swelling, I had proof that it was not all in my head. Still, the answers did not come easily. Lab tests were inconclusive, symptoms fluctuated, and I didn’t fit neatly into most common conditions’ diagnostic criteria. But continuing to speak up enabled my doctors to fine-tune their examination and testing until we finally confirmed my rare disease diagnosis.

At the same time, I began to get involved in patient advocacy. I asked questions, attended events, and eventually began leading programs and creating new opportunities. Now, it isn’t only for myself. Just as Erivo theorizes, I use my voice to speak up for other patients. I share what I’ve learned to help them feel seen, validated, and empowered to ask questions and speak up for themselves, too.

Overall, “Simply More” reads like a cross between memoir and self-help. While many of these life lessons offer universal wisdom, one stands out as especially valuable for anyone managing a chronic illness:

“Assemble your team. Don’t do this life alone. Just make sure those around you are willing to tell you the truth, even when it’s not what you want to hear. They are the people you need.”

This is sage advice! Our “team” includes any number of medical specialists and complementary or alternative therapy providers, as well as the friends, family, and chronic illness community who help us through the physical and emotional ups and downs. We need people with knowledge and experience we can learn from; people who encourage us, but also challenge us. We will have more questions as the disease progresses, so we must surround ourselves with people who respect us enough to listen, believe, and answer honestly.

After reading this book, I feel called to reject Goldilocks’ famous criticism in the three bears’ home. If you ask Cynthia Erivo — or me — sometimes being “too much” is just right.

Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.