Whether your issue is neurological, a joint pain or a fussy big toe, you are your best advocate. No one else will do this for 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
- 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). Having a hard time finding words? Dizzy? Bouncing from task to task without accomplishing anything? You may not think to record such “silent” symptoms that only you experience. Jot them down with the frequency, intensity and duration. Share them with your doctor.
Tip #2: Find a doctor who will listen
- Didn’t get the answer you were looking for? Treated as if you were crazy? Yep. Happened to me over and over, but I didn’t give up. 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. But you need to be willing to invest in yourself by documenting your story along the way. Don’t accept “there’s nothing wrong with you” as an answer when you know your body is telling you something different.
Tip #3: Dress the part
- I found that the better I dressed, the more serious doctors took me. Even if you don’t feel good, put those nice slacks on that says 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 your relevant ailments 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
- I’m thankful I’m not a doctor. Can you imagine bouncing from patient to patient, all of them presenting so differently, and needing to make a determination, all while needing to learn new medical info constantly being released … HIPPA laws breathing down you … and not to mention those pesky patients who are forcing you to invest in malpractice insurance? Doesn’t sound very profitable. What you CAN do for your doctor visit is send a one-page letter in advance. Most doctors are watching the clock, realizing that they have about six minutes per visit before you become a cost. Save them time. Send a one-page letter in advance of your chief complaint and expectation of the outcome of the visit. They will give it thought in advance and likely make your visit more productive. Works for me …
Tip #6: Get multiple opinions
- It took me 27 months and 12 doctors to get an accurate diagnosis. Does that mean the system failed me? No. It just means that all doctors look at the way we present differently. Thankfully I found a neurologist who diagnosed by process of elimination. He explained why all my previous diagnoses did not match up and then found one that would explain all the neurological phenomena. When I researched on my own post diagnosis, I was amazed at how well it matched – to a “T.” Don’t be afraid to get multiple opinions. It might be what saves your life … or puts your mind finally at ease.
Tip #7: Take notes during your appointment (or record it)
- We are not being judged on expert memory during doctor appointments. Take out a pen and paper. 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.
Tip #8: 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.
Tip #9: Share even what might sound ridiculous
- 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. If I’d shared this or that my body temperature changed or that I forgot how to cry, perhaps I might have been properly diagnosed much sooner. But these sounded so irrelevant that I skipped them. Big mistake on my part.
If these helped you, the Afterword of “Brain Wreck” provide further guidance on advocating for yourself.
Copyright Majamo Publishing, LLC 2013. All rights reserved.