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The Mighty asked the rare disease community, “What’s the hardest part of having a rare disease?”


The Hardest Parts of Having a Rare Disease

If it can’t be seen, people will think you are faking it.”

“It is frustrating not having a drug that is actually designed for your condition.”

“There is a lack of focused research efforts. Too often the organizational and cultural barriers delay progress.”

“I have to act like everything is normal, when I feel so abnormal.”

It’s not easy not being believed by the medical community.”

I had to hear there is no cure or medicine for my son — just to take him home and love him.”

The internet is riddled with unreliable sources because it’s not regulated. It’s difficult to find the correct information, support, or treatment.”

“I have not been able to get medical help or insurance coverage due to healthcare formalities, even when it is obvious I need it.”

“The hardest part is not knowing why. Not having a name for it. There are more unanswered questions than anything else.”

I have to explain to people that just because I don’t ‘look sick,’ doesn’t mean I’m not incredibly sick.”

There is a lack of resources available to those of us who need genetic testing when insurance doesn’t cover it.”

I never know what’s next. What’s my diagnosis? Will this be a good day? Does anyone understand? Will there ever be a cure?”

Whether you share some or all of these experiences because of rare disease, one thing to remember is you are not alone.

Originally published: June 1, 2018
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