Before being diagnosed with a chronic illness it never occurred to me that one day, I might have a health issue that wouldn’t be resolved with standard medical care. It was quite a shock to learn that not only did I have an incurable disease, but current medical treatments may or may not work for me. The second shock was getting asked to choose my medication. I thought, I’m not the one who went to medical school, why are you asking me? I let the doctor choose without asking questions because I figured he knew more than me. I would never do that now.
Fast forward almost 19 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 have first-hand knowledge of my disease and my observations and input matters. It’s my job though, to make sure my medical providers understand and acknowledge my concerns so that any problems can be promptly addressed.
Your doctor is there to advise, diagnose and treat illness but 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 for ourselves. Research shows that people who actively participate in treatment decisions feel more empowered, have less anxiety, and are more likely to stick to their plan.1
Decide what you need and take action to get it:
1) Do your own research-
When people hear a friend or loved one have been diagnosed with a serious illness they want to help. Many try to do this with anecdotal stories of healing and unsolicited medical advice. They mean well but they likely don’t know your complete medical history and won’t have all the facts. What worked for someone else might not be relevant to your unique and individual case. If you hear of something that resonates with you, check it out yourself.
2) Ask questions-
Here is a sampling of questions that may be helpful for people living with MS to better understand and manage their illness. These questions can be adapted for any illness.
- What is my diagnosis?
- Why do you think that?
- Is there anything else that could be causing my symptoms?
- What kind of MS do I have?
- What are other symptoms of MS?
- What can I do at home to manage my symptoms?
- How do I know when I am having a flare and what do I do?
- How many lesions do I have? Where are they? What do they affect?
- What are my treatment options?
- Are there any complementary or alternative treatments?
- What medications would be best for my situation?
- What does this medication do?
- What are the side effects and how do I handle them?
- What is my prognosis?
- What can I do to keep myself nutritionally and mentally healthy to help 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. The diary can be used 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 pin-point 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 coverage-
- Always check with your insurance provider before any tests or procedures to clarify the need for pre-authorization, approval, or referral.
- Confirm all doctors, support staff, and equipment used for your service will be covered by your policy.
- Before choosing or renewing a policy make sure your doctors are covered under the plan.
- 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.
- Be sure to ask the health insurance provider what is not covered before committing to a plan
- Research and utilize prescription drug and patient assistance programs.
7) Advocate for yourself-
- Be an active participant in all aspects of your health care.
- 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.
You have the right to have your concerns heard and your needs addressed. Partner with your doctor to make informed decisions but educate yourself to understand your options. Listen to your body and trust your intuition. You are in charge of your health care and your opinion matters!