Navigating the Health Care System

Sometimes as a patient with chronic illness we may feel like the above statement. We can’t let our emotions get in the way of establishing connections with health care providers. To follow, are tips on advocating for yourself at medical appointments while living with chronic illness conditions so you can get the best care. The health care system is complex, allowing decisions to be made solely by doctors may not get you the best results. 

WHY SHOULD YOU ADVOCATE FOR YOURSELF?

It may not always be an easy thing to do. Get a grip on being a nervous wreck! Yes there will be waiting and your hands may get sweaty but, know what you want from the doctor and be firm. Why?

1. You know your body best, explain symptoms that may be unusual.

2. It’s your responsibility to care about your health and the best possible treatments.

3. You deserve the best for your condition.

4. Get to the point, doctors are limited on time.

5. Realize not all doctors may be suited for your care, ask for referrals.

Using these steps will help patients be proactive with their care team resulting in fewer health problems.

UNDERSTANDING CHRONIC ILLNESS

Chronic illness comes in many different forms and circumstances will be different for each individual. Monitoring symptoms daily and ongoing will help you understand your progression. 

Communicating with family and friends about your symptoms will help you be able to describe your situation, help others understand what you are going through and give you an impression on how others will react. Use this feedback to improve your communication skills and divert negative reactions. It can be a barrier when others don’t understand life in your shoes. 

Keep in mind a Google search may not be the best route to go when trying to understand your symptoms! Often medical jargon is tough to understand and many sites are not monitored with accurate information. Many organizations are noted for health literacy and health outcomes like the Center for Disease Control and Prevention.

Being able to keep a cool demeanor while communicating goes a long way. With any aggressive behavior communication fails. 

Usually chronic illness is something that affects you on a daily basis and will be ongoing for the rest of your life. We all have to learn to manage our symptoms and unfortunately may not lead the lifestyle as we formerly did. 

Ask for understanding and support from others.

HOW TO ADVOCATE FOR YOURSELF WHEN YOU LIVE WITH CHRONIC ILLNESS

How to advocate for yourself when you live with chronic illness, is something to know for any health journey! 

• Search for doctors treating your condition in order to become a new patient.
• Carefully do your research.
• Upon first visit, get a feel if this doctor is right for you.
• Check out relevant organizations for your condition
• Consider seeing other healthcare professionals.
• Create a list of questions for discussing with your doctor at the appointment.
• Keep track of your symptoms ongoing each day.
• Bring a family member or friend with you if that makes you feel more comfortable.
• Practice being confident.
• Reach out to others in the chronic illness community.

SEARCHING FOR DOCTORS WHO TREAT YOUR CONDITION

After working with a primary health care doctor, they should be able to help make the referrals necessary to see a specialist. The reason why the health care system works this way is due to insurance companies. It’s not uncommon for health insurance companies to regulate what doctors can and can’t do. It is not uncommon for a specialist MD to take over medical care for specific illnesses. There may be several options in your area or you may have to travel.

DOING RESEARCH

Be careful what search results populate. Finding information on National or International websites monitored by doctors will provide the most trustworthy information. Be aware of the many scams promising cures with supplements.

FIRST VISIT, IS THIS RIGHT?

Healthcare systems are different everywhere. Often you can request a different doctor if the one you see isn’t helpful or makes you feel uncomfortable. Traits of a  good doctor include: treating you as an individual, listening to your concerns and thinking about how to manage your care for you as an individual.

It may be possible to find a patient advocate to work with. Some social workers may be able to relate to certain conditions. It will depend greatly on your service area but nowadays online conferences may also be available.

RELEVANT ORGANIZATIONS

There are many National and Non-profit organizations that provide information and help individuals manage their care. Be on the lookout for in-person or Zoom meet-ups. Some may hold conferences and events to learn from specialists, and other health professionals about your condition. Use this support to help empower you to review issues with your own doctor.

OTHER HEALTHCARE PROVIDERS

Doctors are not the only resource available. Other healthcare providers are important in helping to manage symptoms. Realize prescription medication is NOT the only treatment option. Physical therapy, occupational therapy, CBT,  your pharmacy and working with a nutritionist can be so helpful. Talk with your doctor about these areas of healthcare, and for a referral if necessary. Oftentimes for pain management these other avenues are required. 

LIST OF QUESTIONS

It’s easy to forget what you intended to talk with the doctor about. Preparing with a list and having your information organized is both helpful to you and healthcare providers. Keep a running list of doctor appointments with notes for each session. Note tests done, results and medication changes for your medical history.

• Start as soon as possible if you need to get hold of medical records. The process can often take weeks as phone calls don’t get answered, messages get missed and the postal service can be slow. Be aware record managers are often swamped and being polite is extremely welcomed.
• How organized can you be? Creating a binder or portfolio with sections for important letters with diagnoses or test results helps. Sub-sections may also be needed if managing multiple medical conditions.
• Ask ahead of time if there is any particular information the doctor wants to have access to that may not already be accessible in their system.
• Having lists of your diagnoses, symptoms, medicines, any relevant past surgeries or procedures and allergies or intolerances helps build a picture for the healthcare professional. 

It’s common to get a mental block when asked questions on the spot. So having it written or typed up is so beneficial. Note supplements and other forms of pain relief to discuss at each visit. Also, most visits start with a nurse or medical assistant checking vitals and taking top concerns to relay to the doctor. Use this time to practice speaking like you want to with the physician.

TRACKING SYMPTOMS

Tracking symptoms helps an appointment run smoother allowing information to be conveyed to your doctor. They are appreciative of this as it helps them make decisions about any further tests and treatment options. A useful way to track symptoms is by using a symptom tracker template. Checking in daily and ongoing helps paint a picture of progress.

BRINGING SOMEONE

Sometimes we just need support or a second pair of ears. Another person can deflect doubt of actual symptoms, confirm what you are saying or remind you of other issues. Some clinics can be confusing just to find the office.

PRACTICE CONFIDENCE

When you feel unwell, being confident can be really challenging. We all want help in finding out what is going on and how to manage symptoms. 

It can be hard and feel awkward asking questions as to what ails us. Standing your ground to challenge a doctor can feel impossible. Understand WHY you deserve good healthcare.

Doctors may not always be understanding, it is not unusual for doctors to question what you say or act like they don’t believe you. Just be prepared for these situations, it’s probably more to do with medical training rather than trying to be a jerk!

Gaining confidence will come with time and practice. Having help from supportive people, making lists of questions, and having a visit goal can be extremely helpful. 

REACHING OUT

An option these days, post covid-19, is to use Social Media to reach like-minded people. It’s not uncommon to find other people in similar situations. This is so important in not feeling alone. Isolation can perpetuate depression and we don’t want that.

Just because you have a “New Normal,” you are still human dealing with difficult challenges. With Social Media you can share our experiences, see doctors who are brilliant, tips on managing symptoms, celebrate little wins and support each other on difficult days. You don’t need to feel alone! Creating friendships and sharing support is invaluable.

Social media is used by advocacy groups to share breaking grounds. Seeing the opinions of others and other treatment options gives information to formulate conversations with health care providers. Being part of a community helps give the confidence to ask for what you need for healthcare and in addition feel as best as possible.

Be aware, because Social Media is not closely monitored, we can run into scams and hate messages. Review the author of each article for qualifying credentials. It’s not a perfect situation but more often than not can have positive outcomes!

I hope you find these tips on how to advocate for yourself when you live with chronic illness helpful while navigating the health care system! Please leave any other tips you have in the comments.