... You are mystified when people say that they have a head cold. You have never had a head cold. You have had the sniffles, and then pneumonia, but never just a head cold. Ever.
... You hate the doctor. Not because they don't help, but because you're tired of it. The routine. The treatments. The steroids.
... You are tired of being a burden to your loved ones. You know they worry about you. You know that when they hear you sneeze they brace themselves for the worst. It makes you feel terrible.
... You develop an allergy to everything. This antibiotic. That antibiotic. That other antibiotic. Your doctors get excited when something new hits the market, and maybe you'll only have to take a ten day cycle instead of a fifteen day cycle. You can hope. Unless you develop an allergy to that, and then it's back to the drawing board, AGAIN.
... People ask you about the status of your meds. Are you low? Do you need a new script? When was the last time you talked to your PCP?
... People don't want you to walk, carry things, try hard. Because they are afraid you will die.
... People will ask, "Do you have your meds with you?" Because they are afraid you will die.
... When someone with your condition dies, you will know ASAP. People will remind you, as though you don't remember every day.
... Some people with your condition will challenge you, as though your issues and theirs are exactly the same even though they are not. Refusal to rise to the bait will be viewed as concession. It isn't.
... You will not be afraid of the life you have, because it is the only one you remember. Other people will not understand this ... Mostly people who have bodies that are not broken. You do not have to explain.
... You may do things that aggravate your condition, because your body has never ever worked properly, so what difference does it make? (You eventually decide that this is very stupid.)
... You give up on the miracle you hoped for when you were younger. This is what you get. There is nothing else.
... When you have an episode, you sometimes wonder if this is it.
... You are sometimes so tired that you would be okay if this was it.
... You have experience with people staying by your side for days, watching you. Waiting for you to get worse or better. Willing you to live. So far, they have succeeded.
... You believe in a higher power because you are still here. It's not a complicated belief.