How to Come Back If You’ve Lost Yourself to a Rare Disease


After being diagnosed with a rare disease, there’s often a myriad of questions that follow: What am I going to do? What is this disease? Is it curable? And the question that’s eventually asked: Who. Am. I?

Rare diseases have a way of doing that; making you of question who you are and what you’re good at.

Gracie Gean Bagosy-Young was like a lot of other moms—she had a full-time job, volunteered for all kinds of projects, chaperoned field trips, and attended sports games.

However, that all changed when she was diagnosed with CRPS, or complex regional pain syndrome, six years ago.

She became too fatigued and was in too much pain to keep up with the routine she’d had in place for so long.

At that point, Gracie began to question her purpose in life. After losing everything she attributed to her “identity,” she felt lost. “Learning to deal with the loss of my identity was one of the biggest hurdles that I faced along this journey that I am on,” she said.

Many people working through the effects of a chronic disease have similar sentiments. However, blogger Jessica Gimeno, a woman living with five chronic diseases, believes that for every piece of your identity you lose, you gain something else—for example, wisdom, gratitude, and empathy to name a few.

Unfortunately, the hard truth of chronic illness is this: it changes you. For better or for worse, it’s hard to say; but Gracie insists that the best one can do is learn to separate “who I am from what I do.”

Here are Gracie’s tips for reinventing yourself and finding your long-lost identity:

  • Unfortunately, life can’t return to “normal,” so take time for yourself to adjust to a “new normal”
  • Think through the value you do have. Have a friend help you go through the facts: You’re a man/woman. You may be a sister, brother, mom, or dad. Find your quirks and write ‘em down
  • Learn to find more value in yourself by helping others. Reach out, offer advice, and listen to other people going through similar experiences. People have a way of making you feel fulfilled, and fulfillment is one way to feel valuable. Never forget: a rare disease can’t take away your value

Winnie Nash

Winnie Nash

Winnie Nash, born and bred in Charleston, South Carolina, likes to think she’s sweet as tea. Passionate for people, stories, and a little bit of glitter, she has an especially soft spot for patients and their journeys. A writer with true disdain for clichés, Winnie catches every detail of a story—intently listening—craving the next word. Some may call it nosiness, but to her, it’s just wholesome curiosity.

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