I can't control my sleep.

I can try to with eating better, exercising very lightly, and taking my medication, but IH has two sides to it. For some, it gets worse and worse until you can't take it anymore. Many kill themselves after losing everything; their chance in life engulfed by sleep. Or their bodies get so dilapidated that they get multiple other chronic illnesses and die to those.

They are often the people who can't be treated, who receive no help, who have no one in their lives to make sure that they don't end up homeless, starve from sleeping too much. They are the worst end of the spectrum.

For others, IH cycles endlessly between "better times" and "nothing by sleep attacks" (we call those EDS attacks or Exessive Daytime Sleepiness attacks, or just "Mini Coma" works too). I am one of those.

It can get horrible. I sleep days in a row. I throw junk into my face because it is fast and easy and even breathing feels like running a marathon. I can't communicate because my cognitive abilities are trash.

People from my category can do all the things of the first one I mentioned. Many get depressed. Many get illnesses. Many are never diagnosed and never helped. Many die unnoticed and forgotten unknowingly from complications of rare neurological sleep disorder, too weak to fight for ourselves.

What I am saying is...stop saying that you wish you could sleep as much as we do.

We don't want to sleep as much as we do. It is taking our lives, prisoning us in our homes, and sometimes even killing us.

You can't relate to that, but you can be kind. Supportive. Helpful.

You can donate to IH research, you can share about IH and tell people that we are here and we are real! And please, if you have someone with IH in your life, believe us.

Believe us that we wish we never had to sleep again.