Frustration. It winds you up and can take so much out of you. Not only does it suck energy, but it also distracts and can steal quite a bit of time.
Maybe the circumstances are not panning out as expected.
Maybe you are being held back from what you want, and the solutions you are after seem just out of reach—that feeling of, “You’re so close, and yet still so far.”
It’s sort of like trying to find resources to help you or someone you love who suffers from a rare disease—a disease like hemophilia.
Hemophilia affects 1 in 5,000 male births in the U.S., and approximately 400 babies are born with hemophilia each year. 400,000 people worldwide are living with hemophilia, and about 20,000 are living with it in the United States alone.
Unfortunately, a rare disease diagnosis isolates patients. There’s a limited number of patients who can relate to having the same disease, a limited number of specialized knowledge or doctors who can help, and a limited amount of research efforts.
The limitations compound frustration.
If you have hemophilia, you may bleed for a longer time than others after an injury. You also may bleed inside your body (internally), especially in your knees, ankles, and elbows. This bleeding can damage your organs and tissues and may be life threatening.
You have questions and need answers!
So what can you do?
Frustration may actually be a positive thing, because it can give you a new idea or perspective. Or it can give you the motivation to keep going just a little bit more until you reach your goal.
Life is full of frustrations. From the minor irritations of losing your car keys to the major anxieties of navigating a rare disease diagnosis, frustration is not a pleasant emotion in any magnitude.
If you’re looking for a helpful online resource on hemophilia, this website offers some useful information.
