Every so often on this blog I talk about my Nonverbal Learning Disorder (NLD). It’s not easy navigating this world with that cloak hanging about your shoulders. Sometimes it’s a superpower and sometimes it’s a chain just waiting to tie you up.

As a 51 year old woman, I’m expected to navigate this world on my own and there are times when the challenge of it is simply too much for me. Such as when I have a meltdown in Costco because it’s the weekend before Christmas and I’ve been far too over stimulated. For those of you who saw me singing “Hakuna Matata”, it was either that or scream.

Interacting with health professionals can be extremely scary and frustrating. There’s an alarming number of them that are all too willing to use their education and experience to further their own agenda and stroke their egos. If you have NLD, that attitude can present an even bigger problem and make it more difficult for you to be an active participant in your own health care.

So I’ve come up with some suggestions on how to make it easier on you and your doctor.

  • Questions. NLD people become very aware early on that we ask a lot of questions. The result is people who are in positions to answer those questions, such as adults and teachers, become frustrated and angry with us. We learn to shut up and hide our confusion.

    As someone with NLD, you need to overcome this unintended training. Medical professionals are there to answer your questions. That’s a large part of their job. Not asking questions would be like walking into a McDonalds and being okay with not having your food cooked. However, expecting to come up with questions on the spot often leads us NLD people down a garden path that really has little to do with why we’re there. So, before you go to your appointment, take some time to write down those problems you want addressed. It doesn’t matter how silly or strange those concerns may seem. A silly concern (gosh, this mole looks funny) can have big impacts (melanoma). Write down a few questions beforehand while you’re in a comfortable environment and can take a moment to think about how you want to proceed.

  • No means no. You have the right to have a say in your treatment. You also have the right to delay a treatment until you feel comfortable proceeding. If you say no, then your doctor is obligated to respect your wishes no matter his/her personal feelings in the matter. Now, saying no may not be in your best interests and that is why asking questions is so vitally important.
  • Second opinion. Okay so you feel a bit hinky about your diagnosis or treatment. You’ve asked questions but still don’t feel comfortable. It’s here where a lot of NLD people run into trouble. Because we’ve been told so many times to “just accept it” or “stop asking questions” or “stop being weird,” we learn to distrust or ignore our instincts. This is another area we need to retrain ourselves in. If you don’t feel comfortable or have an uneasy feeling, get a second opinion. Or a third. Or a fourth. It’s okay to keep getting opinions until you’re satisfied. If you were buying shoes, you wouldn’t hesitate to go into store after store until you found a pair that felt right, would you? Why is your medical health any different?
  • Advocate. Some medical professionals balk at this but this is about you, not them. You have the right to have someone attend your appointment with you. The doctor may ask for verbal permission to talk about your issues in front of them but that’s fine. They’re just covering their butt. If a doctor doesn’t let you have someone attend with you or they refuse to see you with someone with you, get a new doctor. A friend or advocate can help you in your appointment by simply being there or by asking questions you may not have thought of before.
  • Internet. The internet is your medical buddy and medical enemy. There’s a lot of crap out there and much of it just plain silly. However, many NLD people are big readers and having a website we can go to can be a huge help in understanding. Ask your doctor/pharmacist/nurse if they can recommend a site where you can get more information.
  • Teach your doctor. Sadly, many medical professionals have no idea what NLD is or how to deal with someone who has it. During your first appointment be honest and tell them about the NLD. Then you need to teach your doctor how best to give you information. Some of us do well with deep information. That means getting down to the nitty gritty of the problem and asking a lot of questions. Others of us want the information on paper or a website so we can look at it at our leisure. Is it possible to email your doctor your questions at a later time? This can be a real time saver for both of you. You have time to think about things and formulate your questions while your doctor has time to answer them when he has a moment and isn’t rushed to see his next patient. Figure out what works for you and then tell your doctor. Some of us need other people to look us in the face while talking. For others that can freak us out.

Your health is important and you need to take an active role in it but that’s not as daunting as it sounds. Having NLD means we need to work around some issues but it’s by no means an insurmountable barrier.

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