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What You Should Remember When Your Illness Doesn’t Fit Into Your Doctor's 'Checkbox'


I can’t even count the number of times I walked out of a doctor’s office wanting to cry. A lot of doctors just don’t get it, or at least they just don’t try. They have a way of doing things, and your rare diagnosis doesn’t fit into their checkbox.

So what do you do when you’re facing yet another discouraging doctor?

I’ve grown weary of the discouragement and I’ve discovered three major ways to fight it.

1. Bring someone to the appointment. Having someone with you, who is on your side, is a sure way to increase confidence. When your doctor looks at you and says, “Are you sure it’s not just stress?” you can turn to your confidant and they can back you up. Have them also provide examples of your symptoms.  They’ve been there and they’ve seen your pain. I recommend bringing a family member or someone that you live with because they will have been there in times that you may not recall. I’ve had my mom or husband bring up symptoms that I completely forgot about because of being put on the spot. Don’t let the doctor dictate your symptoms. Your symptoms are yours alone to define.

It also helps to have your buddy take notes. There are so many things that I miss when I am in a doctor’s appointment. Request to record the appointment or bring a notebook and take lots of notes. It will amaze you how much you forget by the time you get home.

2. Be prepared! Prepare a list of questions. Every question that’s gone through your mind is worth asking. You are there to pick your doctor’s brain.  Don’t leave without getting your questions answered. There are so many times when I’ve felt shy or overwhelmed and convinced myself that my question was unnecessary. Sure enough, when I get home, I regret not asking.

It’s also important to bring a list of the symptoms you experience. Doctors will ask about your symptoms, but the moment you mention one of interest, they’ll ask more about that specific one. And by the time you get through the appointment, you’ll forget to even bring up the four other symptoms you wanted to talk about. It can even be helpful to hand the list to the doctor when you walk into the appointment. Mention that you want to get to all of them.  This is your appointment. Don’t be afraid to take charge.

3. Don’t settle for less. You know your body. You know your symptoms.  Don’t let the doctor dictate your opinion of yourself. If your doctor refuses to affirm how you are feeling, don’t settle for it. Stand up for how you’re feeling.  No one can tell you it’s wrong.

If you walk out of the doctor’s office feeling discouraged and misunderstood, it may be time to find another doctor. There are amazing doctors, but just like any profession, there are some crappy ones out there too. Don’t settle for the crappy doctors when a great one is just around the corner.

I saw a doctor for several years that made me feel invalidated and downright stupid for my symptoms. He told me it was stress and that I should take anxiety meds. He told me I was too worried about it and that I should try and relax. I wanted to give up. In fact, I did for a while. And when I tried again, I discovered there were, not one, but three underlying conditions that were causing my symptoms. Now I have found several amazing doctors who do nothing but affirm every symptom and work with me to discover a way to manage them.

There is a great doctor just around the corner. Don’t give up looking! And don’t settle for anything less than what you need.