Things the Doctors Don’t Tell You:
It is lonely. Family will leave. Friends will leave. You will find yourself on forums and chatrooms, searching in vain for understanding. For compassion.
There is no glory in being broken. Your average disabled veteran or accident survivor will get adulation on a good day, pity on a bad one. You will get pity on a good day, contempt and fear on a bad one.
It is expensive. You will burn through your rainy day savings in the first year. It does not matter how big a house you live in or how nice your wardrobe is, you will inevitably find yourself crying over everything insurance does not cover. The co-pays will slowly kill you. Blue Cross seemingly spites you. You’ll go to the bike shop to tune up your chair, because it’s cheaper than the medical supply store. You will find yourself selling your childhood skateboards on eBay to pay for this month’s meds.
You are public property. Everybody suddenly feels entitled to share their opinion on your body and health. They will stop you in the street and corner you and holiday parties. They will tell you what they think. They will judge. They will intrude. There is no privacy in being an oddity.
There is no control. Nothing ever stays stable for very long. You’ll find yourself having a good month, convince yourself it’s getting better, until once again, you’re in the ER, within inches of your life. You can no longer make plans.
They will look. Say goodbye to anonymity.
Pain is a constant companion. Every minute of everyday. You’ll never really get used to it, but you’ll learn how to deal with it. How to hide it. There are times it will be so bad you cannot breathe or see. Cannot think. There are times you will want to die and times you’re convinced you already are dead. You’ll find yourself at 3am, staring teary-eyed at a bottle of Vicodin or Oxy. You’ll debate it, fighting as long as you can. And then you’ll lose. You’ll take two, sleep for 16 hours, and wake up in the same burning, screaming pain. Opioids will always win over will power.
Nobody will take care of you. Friends are busy. Family is tired. You are alone. You’ll skip meals because you are too sick to get out of bed and make something. You will go a week without bathing because you cannot get out of bed. Eventually you’ll swallow your pride and ask for help- and nobody will be there to give it to you.
It affects everything. Your diet will be affected. The clothes you wear will change. The type of furniture you have will change. The books you read, the music you listen to, and the company you keep. Nothing is the same, nothing is untouched.
You have to fight like hell. You’ll fight tooth and nail for the care you need. You’ll fight your insurance company. You’ll fight the piercing eyes of strangers. You’ll fight your own body. You’ll fight for your life. You’ll fight with your family and friends. Everything is a fight. Survival itself is a constant thought.
People don’t want to hear about it. You’ll know that you’re constantly complaining. People will call it self pity, but it doesn’t matter. You have to get it out. You have to tell somebody- anybody- about what you’re going through. And eventually, you’ll find somebody who listens. Hold on to them.
vaporwave
annaxmalina
andulkaphoto
discoholicmusic
