Here’s what we want you to know about being our doctor

Dear doctors,

Are you looking through our charts and wondering what you’ve gotten yourself into? Are you maybe wishing we were someone else’s problem? Yeah, we know. It’s OK. We know we aren’t the type of patient most doctors like to take on. There are a lot of strings attached to us, and there’s a lot of paperwork waiting to join that already insurmountable mountain of paperwork on your desk.

We can’t be easily fixed, and we know that can be disheartening and frustrating for you. We get disheartened and frustrated, too. Something in common.

Chances are we’ve seen a lot of doctors before you, and chances are they haven’t all been positive encounters. We’ve been doubted, and we’ve been blamed. We’ve been misunderstood, ignored and forgotten about. It’s hard not to be a little jaded after all that. We don’t want to be crushed by high hopes as they crash down, so we’re probably going to be a little wary of you, but we promise we will try to put that aside so we can start anew.

Here’s what we want you to know about being our doctor.

It’s possible that right now we know more about our illnesses than you do, and if our diagnosis falls outside of your specialty, this is almost a guarantee. Please be OK with that. Consult the Internet and talk to other doctors to learn more, but when it comes to understanding how our illnesses affect our lives, talk to us. And even if you’re already familiar managing these conditions, don’t forget that our bodies never read the textbook chapter on “how to have so-and-so rare or unusual combination of conditions” so they might not follow all the rules.

Just be honest with us if you don’t have an answer or if you need to do more research. We’re educated about our conditions, and we’ve developed good rubbish radar, so if you make something up or give us a round-about answer, chances are we will know. And chances are we won’t trust you anymore. Admitting when you don’t know something gives everything else you say more credibility.

Keep in mind that the 10 minutes in which you see us is just a snapshot of our lives. Believe it or not, we’ve spent time worrying about how we look before seeing you. We’ve worried that if we look too put together, you might not believe we’re actually sick, and you won’t take us seriously. We’ve also worried that if we look too disheveled, you might think we’re depressed or don’t care about getting better and that, again, you won’t take us seriously. Just as a frown does not imply that we’re defeated and have given up, a smile does not indicate the absence of worry or pain. Please don’t make assumptions about how we’re doing based on whatever snapshot you happen to capture that day.

You might be scared of us because we have a chronic illness, but you should know we’re scared of you for the same reason — because we have a chronic illness. We’re scared you won’t trust our instincts and will accuse us of overreacting when we express concern. We’re scared you will become frustrated when we don’t get better and put the blame on us, that you will look at failed treatments as our own personal failures. We’re scared that one misunderstanding will red-flag our charts forever. You see, we can be as well-informed and proactive as we want, but we have no power. We can’t prescribe meds, order tests or make referrals. We need you for that. We need you to believe us, and we’re scared that you won’t.

Living day in and day out with these illnesses gives us an awareness of them and a perspective you cannot fully understand. Please try to remember that. And we will try to remember that you can see things we can’t because you don’t live it day to day. We will try to remember that your education and experience treating other patients gives you a perspective we can’t fully understand.

We know you are human and we promise not to hold that against you. We know you make mistakes and that’s OK. Sometimes we’ll catch your oversight, but that doesn’t mean you aren’t doing your job as our doctor; it just means we’re doing our job advocating for ourselves. We also know you won’t always be able to help us. Sometimes at the end of an appointment, you will feel helpless. That’s OK, too. There will be more appointments; we’ll try again.

Just remember we’re human, too, and sometimes we get defeated. Because we know things could be worse, we sometimes forget we’re allowed to wish things were better. And sometimes we stop fighting for them to be better. We lose hope. We need you to help us through those times. Encourage us. Remind us what determination and perseverance look like. Remind us that we have value, and that we are worthy and deserving of the improved health we are working for.

Most important, please know we will always appreciate you giving your time to care for us. Thank you for filling out the endless paperwork. Thank you for going out of your comfort zone to try and help us. Thank you for giving us a chance at a healthier future.

We know it’s your job, but we’re grateful all the same.