I’ve been blessed to have many wonderful medical professionals involved in my lifetime of medical care, but even good professionals occasionally overlook the person in favor of the case. I can tell medical professionals now what I couldn’t for years: I am always a person. If you’re looking for a robot–a machine who always follows every instruction perfectly–you won’t find it here. I will do my best, but my top priority is not keeping you happy. Sorry, I’d rather have a life.

In light of that fact, here are a few reminders for medical professionals that aim to illuminate and maximize interactions with people who have disabilities:

  • People with disabilities often have a love/hate relationship with you.

Those of us who have disabilities tend to collect medical professionals. The good ones we love. You take the time to see us, to joke with us, to comfort us, and to cheer for us. We look forward to seeing you. We’ll even go the extra mile through our least favorite medical hallways to search you out just to say “hi” and show you how well we’re doing. That’s how much we love you.

On the other hand, we hate you.  You represent some of the greatest fears and hardest experiences we have ever faced. You have held our world in your hands, and crushed it. It recovered, but you continue to rock it at will. You have the power to tell us that we only think we are well and whole, that in fact, we are broken and in need of immediate intervention. True or not, we don’t like how the reminder feels, either the one that says we are broken or the one that says you have so much power in this moment and we have so little. If whatever you have to say needs to be said, say it with compassion and with full awareness of the life you are turning upside down.

  • Handle treatment options with care.

I once went to a pediatric orthopedic surgeon for a second opinion. I had no major physical issues at the time. From my perspective, the purpose of the visit was to establish a connection with a local medical professional, so that I wouldn’t always have to make the several-hour trip to see my regular orthopedic surgeons. It seemed like a good plan at the time, but within the few minutes of that first consult, that “second opinion surgeon” had a list of surgical recommendations for me. All I could think was “Wait a minute. I know I have a disability, but there’s nothing wrong with me right now. And this guy’s getting his scalpel out…I’m out!”

It’s not easy for medical professionals to grasp and accept, but sometimes the best thing you can do to help somone who has a disability thrive in life is to hold back in your urge to go medical on them. When I say this, I am certainly not talking about witholding life-saving treatment or treatment that would truly maximize function or prevent further dysfunction.  Some surgical intervention is absolutely necessary, and whether we say it or not, we are grateful that someone is skilled to perform it. For myself, I would not be physically functional today without the efforts of many medical professionals.

But I ask you to be realistic in your treatment of people who have disabilities because of what I know from being their patient…

1) You can’t fix me. My disability sets some parameters I function within, and it also sets some parameters that you function within. You can push those boundaries, but most of your victories will be small and/or temporary. In the end, it is what it is.

2) Every time you stage a large-scale intervention the person who has a disability loses functional skills. We adapt to our individual clusters of abilities and disabilities. We learn to function with them, so anytime you alter that cluster for someone, there’s no predicting the full impact on his or her daily function. He or she may adapt easily, may re-learn eventually, or may never recover those functional skills (depending on what their system for the lost skills was and how you altered it).

Let this knowledge temper your suggestions of invasive procedures and inform your approach when such suggestions are warranted. Don’t make us ask what long-term payoff we can expect from the procedure you suggest, and keep in mind: it has to be a pretty big payoff to offset the unknown loss.

  • Explain what you are doing to the patient…every time.

I know that sometimes it seems like the best thing you can do for a patient in your care is do what you need to do for him or her with as little disturbance as possible. This is true, but don’t consider letting him or her know what you are doing before you do it a disturbance. A disturbance is what you are very likely to get if you don’t talk to the patient beforehand and startle him or her with your actions. What will happen exactly is unpredictable. It could be anything from a mild reflex to a full-blown freak out session. As a patient prone to freak out, trust me when I tell you it is better to announce your presence, explain your procedures, and wake your patient to do so, if necessary.

  • You have the opportunity to give an amazing gift of empowerment. Give it on purpose.

Some of the most empowering moments in my life have been when my medical professionals have said they are proud of me. But that’s not just because they said the words. It wasn’t an affirmation repeated at the end of every meeting to boost my self-esteem. I had to earn those words. It took years of hard work. Because of that, when I did hear words of pride from my medical professionals, they meant something. It was the ultimate validation. Give that to your patients. It matters!