The Pain of Rare Disease No One Talks About


The word “disease” has such a common misconception in our society. So much negativity surrounds the idea of a person having a disease. As someone who has fought a rare disease since birth, I understand the powerful of positivity and the importance of educating as many people as possible.

woman in 'rad to the bone' shirt

I was born with a rare bone disorder called osteogenesis imperfecta, more commonly known as brittle bone disease. The majority of my childhood memories come from being in the hospital, where I spent and continue to spend most of my days. I’ve broken bones and endured multiple surgeries/procedures throughout my 16 years.

Most rare disease fighters want others to know that yes, rare diseases can affect us physically. However, the mental pain is rarely talked about.

There are thousands of rare disease patients who go to work and school on a day-to-day basis. We want you to know that sometimes we can’t meet your expectations. Not because we don’t want to but because battling an illness along with managing school, work and our personal lives stresses us out. One side of our brain is filled with appointments, surgeries, treatments and pain. The other side of our brain is filled with assignments, goals, work, friends, dates, life.

There’s a lot of pressure on us to meet 10 of the same expectations as everyone else with no questions asked. Don’t get me wrong. I’m not asking for your pity; I’m asking for your understanding when I get overwhelmed. I’m asking for your support when I need to say no to an activity because it’s too overwhelming or when I just need to stop and take a break.

Living with a rare disease reminds me of the holiday seasons. It’s always busy, you’re on the go, you have so much to do in only a little amount of time. You feel as though you can’t take care of yourself because you have so much on your mind.

woman in hospital bed

When people think of the word “disease,” they get frightened, question if it’s contagious, then distance themselves from you. We want you to know that just because you hear the word “disease,” doesn’t mean it’s some raging sickness that’s going to infect you.

Disease is defined as a disorder of structure or function in a human, animal, or plant, especially one that produces specific signs or symptoms or that affects a specific location and is not simply a direct result of physical injury.

Society, don’t you get this?

We deal with physical pain, mental pain, and stigma. Rare diseases are painful, cause exclusion and discrimination, and paint “abnormal” and “weird” pictures in the uneducated’s minds.

Guess what? I’m just like you. I have my hard days, struggles, and low points where I feel like giving up. My disease doesn’t define me, but it’s part of my story. This word, “disease” isn’t an invitation for you to walk out on me. There’s nothing wrong or gross about this word; there’s something wrong and gross about society.

I live with a rare disease. I want you to know that managing an illness and coping with life’s daily struggles is stressful.

I live with a rare disease, and I want you to know there’s absolutely nothing wrong with the word “disease.”

I live with a rare disease, and even though I get overwhelmed with pain, high expectations and lack of understanding, I’m just like you.

Top image via Thinkstock.


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