Be An Active Participant In Your Health Care

Research shows that being an active participant in your health care reduces anxiety and promotes empowerment, making it more likely you will stick to your plans.

Times have changed

Before being diagnosed with Multiple Sclerosis, it never occurred to me that one day, I’d have an incurable disease. Previously, anytime I had gotten sick, I went to the doctor and got medication to heal me. It was quite a shock to learn that not only would I not get better but current medical treatments may or may not work to help me.

The second shock was getting asked to choose my medication. In a nutshell, I thought, why are you asking me? I’m not the one who went to medical school. At the time, I let the doctor choose my medication without asking questions. I figured he knew more than me.  I would never do that now.

Almost two decades later…

Fast forward almost 20 years and I’ve come to realize that doctors are a valued and necessary part of my health care team but I’m the one who knows my body best. I’m the one with first-hand knowledge of disease impact and my observations and input matter. It’s my job to make sure my doctors understand and acknowledge my concerns so that problems can be promptly addressed.

Ultimately, it’s our responsibility to educate ourselves on disease symptoms, progression, and treatment options (both pharmacological, and complementary) so we can ask the right questions and make informed decisions.

Be an active participant in your health care by deciding what you need and taking action to get it:

1) Do your own research-

When people hear that someone they care about has been diagnosed with a serious illness they want to help. Many try to do this by telling anecdotal stories of healing and giving unsolicited medical advice.

They mean well but they don’t know all the facts. What worked for someone else might not be relevant to your unique and individual situation. If something you hear resonates with you, check it out yourself.

2) Be an active participant in your health care by asking questions-

Ask your doctor the following questions to better understand and manage MS symptoms and disease activity:

  • What is my diagnosis and why do you think that?
  • Is there anything else that could be causing my symptoms?
  • What kind of MS do I have and what should I expect?
  • Is there a list of MS symptoms and how do I manage them?
  • How do I know when I am having a flare, and what do I do?
  • How many MS lesions do I have? Where are they? What do they affect?
  • Treatment options? DMTs and complementary or alternative treatments?
  • What medications would be best for my situation and what does it do?
  • How do I handle side effects?
  • What can I do to keep myself nutritionally and mentally healthy to manage my symptoms and improve my day-to-day life?

3) Keep a symptom diary-

Symptoms are a sign that something is out of balance. Checking in with your body every day and recording physical and mental symptoms is a great way to keep track of flares, progression, or challenges with daily living. Use the diary as a tool to initiate a conversation with your doctor about any potential issues.

If you want a big-picture look at how your daily habits may be affecting your overall health, also record mood, medications, sleep, nutrition, hydration, exercise, and the weather. These factors can help pinpoint patterns and possible triggers for symptoms. These small details can make a big impact.

A symptom diary is a tangible record of symptoms, progression, quality of life, and efficacy of medications and treatments.

4) Be prepared for doctor visits-

  • Bring a list of current medications with dosages to appointments.
  • Bring copies of recent test results or lab-work. Confirm your doctor received and reviewed it. Make sure you are clear on the results and what they mean for you.
  • Bring your symptoms diary to review potential problems.
  • Make a list of the top three concerns to discuss with your doctor. Hand the list to your doctor upon arrival to facilitate discussion.
  • Have your doctor keep the copy of talking points so they become part of your permanent record.
  • Time is limited, use it wisely, and stay on point.

 5) Get organized and keep your own medical records!

  • Review medical statements for billing errors. Often the problem is a coding error.
  • Request a copy of all lab work, tests, reports, and doctor notes for your records.
  • Review the records and check for accuracy.
  • Check the Doctor Visit Notes to make sure you and your doctor are on the same page regarding your status and treatment.
  • Keep the above information for your records to create a timeline and proof of your medical history.

 6) Understand your health care coverage-

  • Always check with your insurance provider before any tests or procedures to clarify the need for pre-authorization, approval, or referral.
  • Confirm that all doctors, support staff, and equipment used for your service will be covered by your policy.
  • Make sure your doctors are covered before choosing or renewing a policy.
  • Before choosing or renewing a policy check to confirm your prescriptions are on the drug formulary, and the cost.
  • Know the difference between co-insurance and a co-pay.
  • Consider premiums, co-pays, co-insurance, prescription coverage, and maximum out-of-pocket expenses (if applicable) when choosing a plan.
  • Confirm what is not covered before committing to a policy.
  • Research and utilize prescription drug and patient assistance programs.

7) Be an active participant in your health care by advocating for yourself in all aspects of your treatment plan:

  • Take part in all the decision-making.
  • Don’t leave an appointment with unanswered questions or feelings of uncertainty.
  • Never be hesitant to ask questions, disagree, or ask for clarification.
  • If you want a second opinion, get one.
  • Reach out to others with similar interests to learn about resources and support.


Doctors are an essential part of the health journey to diagnose, advise and treat illness. Partner with your doctor to learn all available treatment options. Take charge of your health by educating yourself and being a part of all decision-making. Listen to your body and trust your intuition because your opinion matters!

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