By Penelope Conway
Doctors are smart. They have gone through years and years of study, had hands on experience, seen the good bad and ugly, and want the best for their patients. We’ve been told over the years to trust them because they know what they’re doing, but in today’s day and time, we have access to vast amounts of information that many times even doctors haven’t researched for themselves which gives us more choices and options in how we manage our own health.
My first neurologist, the one that diagnosed me after MRI’s and a spinal tap, wasn’t a very compassionate doctor. I went to see him after the tests and the conversation was short and simple. “You have multiple sclerosis. It’s probably benign. We’ll start you on a daily injection you will give yourself. Come back to see me in 3 months.”
I left that appointment numb, not just in my legs but in my thoughts. MS? Injections? Benign?
Well, over the years, of course I changed doctors and began seeing someone that actually explained things to me in greater detail and who cared about my wellbeing. She did everything possible to help me manage my continual progression. Benign? Uhh…not even close.
I have been through 4 approved MS medications and 1 trial med but failed them all. It’s disheartening when nothing you do seems to help. I do the things I know I can do on my own with physical therapy, a healthy diet and managing stress, but those things don’t erase MS. They do help me with managing symptoms, so I’m thankful for that.
This past year my doctor wanted me on a certain medication that I questioned. I researched it and I just wasn’t comfortable with the data I found. My choice was to wait and just watch its effectiveness over time. Since I had already failed at so many other meds I wasn’t in a hurry to try something new that wasn’t proven. That conversation wasn’t an easy one to have.
How do you tell someone that wants you doing well that you want to hold off on something they want you to try in anticipation that it will slow down your MS? How do you explain the fatigue you have in trying to manage continual medical appointments, bills and crushed hopes? If you can’t talk to your doctor about those kinds of things then maybe it’s time for a new doctor.
Thankfully my doctor is understanding and compassionate even during the hard-to-have conversations. She shares her concerns, knowledge and hopes but also allows me to have the final say. I admit that I felt pressured to move forward with trying something new but realized that the pressure was more about not giving up than trying something new. That is one thing I assured her I wouldn’t do. I won’t give up, not now…not ever.
Always remember that you are the one in charge of your own health. Doctors, nurses and medical professionals are great at giving you options and helping you to weed through the chaos you are facing, but in the end it’s you that has the final say. Do your own research and openly talk with all those involved in helping you to manage your disease. With a great team of professionals and supporters around you, even an unpopular decision is manageable.
*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.
