When you have an incurable illness, you spend a lot of time going over the why’s.

But it’s the when’s that transform you into a person with a life you barely recognize.

• When staying alive becomes your full time job.
• When your body betrays you in ways you never imagined.
• When your brain says, “not today”.
• When every day you lose a little bit more of life as you know it.
• When you don’t even recognize the face staring back at you in the mirror.
• When no matter how hard you try to stay positive, life bitch slaps you into reality.
• When you beg for sleep that never comes.
• When you lie alone in the dark in pain & despair, listening to yourself breathe & praying for daylight.
• When you are cognizant of every breath you take because it takes conscious effort.
• When pain makes you acutely aware of every cell that makes up your body.
• When a cramp is not just a cramp and you watch in agony as your muscles spasm uncontrollably.

• When every day body functions require intervention.
• When you have ports, pumps, catheters, and a number of other devices that help your body do what it’s supposed to do.
• When your medical supplies take up more space than anything else you own.
• When your medication doesn’t fit in one, two or even three pill cases.

• When they finally give you a medicine that works and your insurance says, “nope”.
• When your dignity is obsolete.
• When a good day means you didn’t piss yourself.
• When you reach the point that you have nothing to lose, so fuck it, you do & say exactly what you want with zero fucks given.
• When you can stand in a crowd of people & feel completely alone.
• When it takes longer to plan & pack for a trip then the actual trip will take.
• When you’re at the mercy of strangers, simply because they have, MD after their name.
• When you get trapped in the grocery aisle, with your wheelchair, because this world is not created equal for the disabled.
• When you’re jealous when others get a serious illness & beat it, because there’s no beating your illness.
• When someone needs you & you can’t help, because your body’s being a bitch.
• When somedays you’re exhausted just hiding the fact that you’re sick.
• When every fiber of you’re being is screaming for help, but you remain silent.
• When you sit and listen as life goes on without you.
• When your faith in God is tested, to the breaking point, every minute of every day.

When you have an incurable illness, that leaves you disabled, every day is a fight for your life. I don’t just mean a fight to stay physically alive. I mean a fight to “live” & not merely exist.
What is your “when”? Leave a comment and let us know!