Guest Blog: A Patient’s Guide to Self-Advocacy (Part 1/2)


Having to navigate our health care system can be overwhelming and daunting, especially with a chronic illness. We already feel awful as it is without having to add the full time job of researching our chronic illness (what it is, treatment options, studies, finding support and other people who live with it, etc.), but that’s exactly what we have to do for ourselves every day. Chronic illness is never ending, and neither is our research and self-advocacy.

I was 19 when I was first diagnosed with endometriosis after experiencing symptoms for years. I was young and blindly believed everything my doctor told me. Advocating for ourselves is something I’m very passionate about when talking about chronic illness, simply because it’s something I wish I would have done when I was first diagnosed. I want to help other people start advocating for themselves at the very beginning of their journey, so they don’t have to go through the same thing I did. If I help one person, I’ve done my job.

I often speak to newly diagnosed patients about their diagnosis story and recommend they ask their doctors a series of questions so they can be well-informed and successfully advocate for their health. Below are a series of questions for chronic disease patients I recommend every patient ask their doctor, as well as questions I believe every patient needs to ask their insurance company:

Questions for every stage of diagnosis

Trying to get a diagnosis and receiving a new diagnosis can be frustrating and hard to navigate depending on the chronic illness and the doctor. Here is a list of questions I recommend asking your doctor if you are trying to get a diagnosis:

      • Can you order extensive blood work (CBC, Complete Thyroid panel, genetic testing, etc.)?
      • Can you refer me to a specialist for further testing and diagnosis?
      • Is there something I can try for inflammation and pain while I’m waiting for a diagnosis? (Only ask this if it’s relevant.)

Here is a list of questions I recommend asking your doctor if you have just been diagnosed:

      • What resources do you provide to patients who have just been diagnosed with my chronic illness?
      • What treatment options do I have available? What are the potential side effects?
      • Can I do more research before starting treatment? (The answer to this question should always be yes.)
      • Do you know of any patient support groups for my chronic illness?

Here is a list of questions I recommend asking your doctor if you have been diagnosed and experiencing symptoms for a longer period of time and aren’t receiving the care you need:

      • Can you refer me to a specialist? (If the answer is no and you feel like you need to be, look into making an appointment with a specialist yourself without your doctor.)
      • Are there any other treatment options available I haven’t tried yet?
      • Are there any research studies you know of that I can participate in? (Only ask this if you feel comfortable in participating. For me, it depends on the type of research study.)

Questions for Insurance Companies

Unfortunately, insurance companies get to decide what they cover. They can choose not to cover a medication or surgery that we and our doctors believe will be helpful in our health care, which is awful. It’s important that we know what questions to ask our insurance companies because they may not offer all of the information we need. Here is a list of questions I recommend asking your insurance company if/when needed:

      • Do I have to have a referral to see a specialist for it to be covered? If so, is there any way I can override this if my doctor won’t refer me to a specialist for my illness?
      • How long does it take for prior authorizations to be approved? (Insurance companies may require prior authorizations for medications, surgeries, etc. This means your pharmacy and doctor have to work together to send the insurance company paperwork regarding treatment for approval and can take days or weeks. If it’s not approved, the patient is responsible for paying the entire cost.)
      • Is there anything I can do if a doctor I want to see for my illness is out of network?
      • What all is involved in the appeal process? (This can be helpful if you are denied surgery coverage, but you and your doctor think it’s necessary for treatment of your illness.)

These questions will be relevant anytime you change insurance companies, too.

How to start advocating for yourself

Your body is your body. No doctor can force you to do a treatment you don’t feel comfortable doing. Every doctor should answer every question you have. If they give you an ultimatum with treatment or other options, please find another doctor. If a doctor tells you your questions are irrelevant or don’t matter, please find another doctor. I know it’s hard to believe sometimes, but there are doctors who take their job seriously and believe patients. I have been to more than 20 doctors trying to find answers for my pain and symptoms. It’s overwhelming to change doctors, but it may be necessary in treatment for our chronic illness. We deserve the best care possible.

It’s also important to know what to look for when researching. Websites like Mayo Clinic can be really helpful in learning about your symptoms and possible diagnosis at the beginning depending on the illness. I think it’s important to know the diagnoses that could be possible with your symptoms before going into your doctor appointment so you can have some questions formulated. I

t’s also important to research, research, research! This may be something you do after your doctor appointment after options are reviewed and discussed. Researching medications is crucial, especially when looking at potential side effects. (Like osteoporosis from the Lupron injection for endometriosis treatment – I’m speaking from experience.) You can review studies and read about how many participants experienced a certain side effect to know how prevalent it may be. The NIH is a great website to rely on for this. Please note that it’s important that you don’t only rely on the drug company’s website, as they may put things in very small print or find a loophole that allows them not to provide information directly on their website. I recommend you also look into any relevant lawsuits that your pharmaceutical company may be involved with to see how it might impact you. You may also find helpful information from organizations that are disease-specific, like the Center for Endometriosis Care for endometriosis treatment.

All in all, I can’t stress how important it is to research and not relying on one place for your research.

About Samantha

Samantha Bowick, MPH is an author and patient advocate. She is the author of Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options and Living with Alpha-1 Antitrypsin Deficiency: The Complete Guide to Risk Factors, Symptoms, and Treatment Options. She will be having the Living with Endometriosis Workbook and Daily Journal published February 2020. Samantha is the founder of Chronic Illness Support, LLC and is getting ready to launch her podcast that will feature guests talking about their chronic illness. She uses her experiences to help others who suffer with endometriosis, alpha-1 antitrypsin deficiency, sphincter of Oddi dysfunction, and other chronic illnesses.

Instagram: @skbowick
Twitter: @skbowick