Being a medical mystery is complicated on many levels. Having a chronic untreatable medical condition becomes a series of good, bad and ugly days, of reminding friends and family who don't see you on a daily basis that yes, you're still sick. It means explaining to them, again and again, that this isn't going to go away and you're not getting better until the mystery is solved. Yes, it's a big struggle just to get through most days, but you are tired of whining about it so you just suck it up and keep on doing what you've got to do. Many of my friends and family have no clue that I have chronic unresponsive severe asthma and those who do don't really have a clue what that means. It doesn't come up in conversations much. Besides, no one wants to hear about your ailments. Even if they say they do, they don't. Trust me.
Having a chronic physical condition means missing out on things that matter a lot to you and matter to the people who matter most to you, sometimes at the last minute. When you have a condition that doesn't include an obvious physical handicap, people question the validity of your complaints. You look fine. What's the problem? It becomes an endless stream of explanations and apologies and clarifications. When you have a chronic cough, people look at you like you're Typhoid Mary. Or they want to fix it right away with a glass of water or a cough drop or some remedy they found on the internet or some herbal concoction or vitamin therapy they swear will work. I have tried everything. It becomes tiring trying to explain that. So for the most part, you just stop talking about it and you do everything you can to hide it or you just say thanks a lot and let it go. People mostly can't understand things that aren't black and white. It's human nature.
I have spent a lot of years pretending everything was fine and I do so much in such a public fashion that most people have no clue I'm living with a chronic condition. When I'm on phone calls and I start to feel that tickle in my throat, I just make an excuse to hang up. It's easier. If I'm at a big trade show or public event, I always know where the nearest restroom is just in case I have to duck in and cough. It doesn't affect my ability to deliver when I need to do so. It's complicated, but I have a tenacity and a resolve that will not be denied and I refuse to give up or give in. I'm a fighter.
I realized six years ago after a very scary experience that the only way you're going to get well is if you're willing to fight. The way the medical system is structured, it is easier to hand you the prescription that works for everyone else and send you on your way than it is to seek deeper answers. If your doctor isn't fighting for you, find another doctor. If you're not getting the answers you need, ask someone else. Keep asking and keep seeking until someone listens. Find someone to help advocate for you if you get too sick to do it yourself, sometimes having someone else confirm what you've been saying for months or years can make all the difference. Doctors are funny like that. You do not have to be a good patient and follow the rules, in fact if you want to survive I suggest you don't.
"Do not go gentle into that good night.
Rage, rage against the dying of the light." Dylan Thomas