When most people find out someone is living with a rare health condition, their first thought is just how hard it must be for that person to carry on every day, facing their diagnosis. But for many who have a rare condition, the struggle began long before they were diagnosed.

In fact, the battle to piece together symptoms, work with a seemingly endless rotation of specialists, and fiercely advocate for themselves, can make people feel like that final diagnosis is its own victory. It’s a clear answer, and the end to all the questions, like, “Am I crazy?” “Will they ever figure out what’s wrong?” “Will I have to live in this misery of not knowing forever?”

That diagnosis may be their first real piece of hope they’re given, as they finally feel validated and able to move forward. However, it can also spark the beginning of an even longer list of uncertainties, and leave them fearing that their condition will cause them to be a burden on their family or friends.

It’s not always clear just what that diagnosis means. Some rare health conditions are potentially temporary, others are lifelong but manageable, and then there are those that come accompanied by heartbreaking statistics and life expectancy rates.

We Asked, You Answered

Through a recent survey, we passed the pen to people living with rare conditions and asked them to write about some of their feelings and personal experiences. After reading through hundreds of entries, here are just a few of the heavy, uplifting, and honest messages they sent:

“It’s hard, it’s often lonely. Acceptance is hard and so is adjusting. Learn to not be afraid of your health condition and accept it, then you’ll find a better way to live with it.” —Holly, Stiff Person Syndrome and Retinal Vasculitis

“Living with a rare health condition is not easy and sometimes there is no choice but to fight if you don’t want to let yourself die. There will be times where things go bad and it feels like they won’t improve, but having a rare health condition gives a whole new perspective on life to be able to appreciate living even more.” —Sydney, Superior Mesenteric Artery Syndrome

“Because I don’t “look” sick, a lot of people don’t believe I’m as disabled as I really am.” —Kevin, POTS; EDS; CVID; NDPH; Chronic Fatigue Syndrome (CFS)

“Everyone battles their illness in their own ways. Do not judge what you do not understand!” —Marie, Stage IIII Sarcoidosis

Community and Encouragement

It’s clear that each person with a rare health condition copes in their own way and holds a unique perspective. For someone whose symptoms or flare-ups are unpredictable, their outlook can vary drastically from one day to the next. Which is normal, understandable, and somewhat expected given difficult circumstances.

One major theme that came from this survey project so far is that healthy or not, the journey of life is best traveled alongside someone who can relate to you and offer accountability and encouragement. This is especially true, and particularly difficult, for people living with a rare health condition. That’s why we hope that everyone we hear from can have the opportunity to continue to feel empowered by sharing their story, feeling heard, and receiving comfort through community.

It can be overwhelmingly lonely to live with a condition so rare that you may never meet anyone in your lifetime who’s going through the same thing, but the truth is, you’re not alone.

We are so honored to have all of you participate in the Health Stories Project community, but there are also support groups beyond HSP that can be beneficial to your health journey. That’s why have compiled this list of resources to help you connect to a rare condition support group:

GARD – Genetic and Rare Diseases Information Center

NORD – National Organization for Rare Disorders



If you’re living with a rare health condition and you would like to contribute to our survey, click here to share your story.

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