Whether your issue is neurological, a joint pain or a fussy big toe, you are your best advocate. You have the experiential information required. It’s not up to your doctor; it’s up to you. Take charge in the lack of diagnosis and perhaps you’ll benefit from the lessons I learned the hard way …
Tip #1: Trust your gut and track symptoms (even the seemingly silly or insignificant ones)
- You’re the only one who knows how you really feel … even if you can’t put your finger on it. Take notes to document the neurological phenomena (or whatever your issue is), including frequency, duration and severity. As embarrassing as it is, my problem solving was so damaged that I couldn’t figure out how to leave a grocery store. I’d stare at the exit and entrance signs … “well, I am entering the parking lot, so ‘entrance,’ right?!” I’d pretend to study my receipt until another patron exited, then quickly follow them out. All of these “trivial” things matter. Providing examples to your doctor, even the bits that sound ridiculous, may lead to a more accurate and timely diagnosis.
Tip #2: Get multiple opinions until the diagnosis fits
- Didn’t get the answer you were looking for? Treated as a mental case? After 27 months and 12 doctors, I finally got an accurate diagnosis for a brain injury. I refused to give in to being “crazy.” There are so many good doctors out there. Be patient and keep seeking help until you find one who will take the time to think outside the box. Don’t accept “there’s nothing wrong with you” as an answer when you know your body is telling you something different. Take care of you … be bold and get multiple opinions. It might be what saves your life … or puts your mind finally at ease.
Tip #3: Dress the part
- I found that the better I dressed, the more seriously doctors took me. Even if you don’t feel well, put those nice slacks on that say you care about yourself and you’re worth the doctor’s time. The better you treat yourself, the more they pay attention to you, from my experience.
Tip #4: Conduct research to educate yourself
- In this age of the Internet, we are better equipped than ever before to research information to prepare us for doctor visits. Be careful not to make conclusions, however. Just because several of your symptoms match a particular disorder or illness, don’t self diagnose. But use the information to document relevant symptoms so you can make the most of your doctor visit. Doctors are trained to filter based on their extensive training that most patients don’t have. Your research can help you prepare important questions.
Tip #5: Send a letter in advance
- Send a one-page fax in advance to your clinician with your chief complaint and expectation of the visit’s outcome. The key is keeping it summarized to one page. Giving the doctor an opportunity to review in advance accomplishes several things:
- Distinguishes you from others
- Shows you take your health seriously
- Provides the doctor a chance to give your situation thought in advance
- Makes your visit more productive
Tip #6: Take notes during your appointment (or record it)
- We are not being judged on expert memory during doctor appointments. Take notes. Your doctor will most likely appreciate that you are thoughtful about what they are saying by documenting the conversation. These notes give you an opportunity to reflect and determine follow-up questions. Having a voice recording of the visit will help ensure that no information falls through the cracks and that your thoughts and feelings in the moment do not affect your interpretation of the information.
Tip #7: Four ears can be better than two
- Have memory or concentration issues? Bring someone you trust with you to help with notes or real-time questions – especially someone who has been following your medical issues. They may think of questions that help take advantage of the time with the medical practitioner. How many times have we left the exam room and then suddenly thought of five more questions? Happens to me all the time.
If these helped you, the Afterword of Brain Wreck provides further guidance on advocating for yourself.
Copyright Majamo Publishing, LLC 2014. All rights reserved.