With MS, I Have Learned the Importance of Being My Own Best Advocate

Jennifer (Jenn) Powell avatar

by Jennifer (Jenn) Powell |

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Jennifer Silver LiningsQuality healthcare is imperative when living with a disease such as multiple sclerosis. While the operational definition of “quality” varies from person to person, I find it to be contingent on the same variable: the doctor/patient relationship.

A relationship between a doctor and a patient is symbiotic. Any healthcare regimen, medication choice, or treatment protocol is ideally the result of a collaborative effort. What you bring to the table in self-knowledge, they can meet with expertise.

While your doctor is knowledgeable in their specialty, you understand yourself best. I cannot emphasize enough the importance of integrity when sharing your daily habits. It may be embarrassing to share personal aspects of your life, however, only with full disclosure can your doctor create an optimum treatment plan. Everything from eating and sexual habits, to legal and illicit drug use, should be shared. Your conversation is protected by law and will remain confidential unless you instruct otherwise.

After 30 years of navigating various insurance carriers, doctors’ offices, and hospitals, I have learned the importance of being my own patient advocate. Understanding insurance benefits, co-pays, deductibles, and medication costs will prepare you for any out-of-pocket expenses. If you are unapproved for a specific test, procedure, or treatment always appeal the decision. The extra effort it takes will be worthwhile if your appeal is granted.

Actively participating in your healthcare is paramount. Knowledge is power, and an informed patient is a happier, healthier patient. Building and maintaining a good relationship with your doctor is especially important when living with an incurable and potentially progressive disease such as MS. I encourage you to keep notes, ask questions, and, most importantly, listen. Our time with any given provider is limited so keep your questions as concise as possible.

If you are unable to communicate your own needs, you can have a trusted family member, friend, or adviser advocate on your behalf. Let your doctor know who is acting as your advocate so that your needs can be met in the event you are unable to convey your wishes.

It can be a challenge to maintain a healthy dialogue with your physician. Doctors have a limited amount of time and tend to be more clinical. Patients are eager for answers and are understandably more emotional. Seemingly innocuous words risk being lost in translation. Bring a pen and paper or recording device so you can revisit the conversation outside the confines of the office. Do not be afraid to ask for clarification, as a helpful doctor is a good doctor.

Keep a file for operative reports, MRI summaries, and anything else you feel is pertinent. Several years ago, I changed insurance carriers, and because of this, I had to change doctors. I had kept some of my own records, and so I was able to begin disease-modifying treatment almost immediately.

Your doctor is your ally and will help you to reach your medical goals. Honest, open communication is key if you are to build and maintain a working relationship. I am grateful for my current medical team; they help my strengths to shine while encouraging me to improve.

In advocating for myself, I’ve found those who will advocate with me.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.


Daphne Phillips avatar

Daphne Phillips

This reinforces my own view and practice in confronting my MS experience. However, for me, there is limited interaction with my doctor. I interact more with physiotherapists, massage therapists, nutritionists and the like. I am content with my condition and status.

Kevin Lipetzky avatar

Kevin Lipetzky

Earlier this year I started ridding bicycle. I record my rides on Strava, an ap on my iPhone. On my profile I take pride in saying, l have multiple sclerosis. I struggle walking with a cane. But, l can ride a bicycle. How crazy!


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