PHA Patient Self-Advocacy Toolkit

PATIENT SELF-ADVOCACY

The Patient Self-Advocacy Toolkit ofthe the Pulmonary Pulmonary Hypertension Toolkit isis aa resource project of HypertensionAssociation’s Association’sEarly EarlyDiagnosis DiagnosisCampaign.

Campaign.

Patient Self-Advocacy Toolkit |1

Table of Contents

Pulmonary Hypertension is a rare, hard to diagnose illness, and many of our patients experience periods of uncertainty preceding their diagnosis. PHA understands the frustration, fear and uncertainty that come with having an undiagnosed illness or unexplained symptoms, and wants to help.

This Toolkit has been designed to help you be your own best advocate as you navigate the complex and sometimes difficult road to diagnosis. We'll show you how to speak up for yourself, how to ensure that your perspective is heard and that your questions are answered, and how to take control of your healthcare journey.

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Be Organized

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Be Informed

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Be a Partner

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Be Sure You’re Covered

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Be in Control

Forms and Worksheets

Highlights key points and takeaways

WHO is this Toolkit intended for?

The Patient Self-Advocacy Toolkit is intended for anyone facing unexplained symptoms and/or an undiagnosed illness. While this Toolkit was designed for you - the patient - your family and friends might find it helpful as well.

WHAT can I expect from this Toolkit?

This Toolkit will provide you with strategies, tips and best practices to help you advocate effectively.

It also includes forms and worksheets that you can use to keep track of your important health information. We hope that it becomes a "go-to" resource for you - and maybe even your healthcare team.

HOW should I use this Toolkit?

We recommend that you read through as much of the Toolkit as possible. We've provided printable versions of useful forms and worksheets which you can take with you to your healthcare appointments.

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Learn more about PHA’s Early Diagnosis Campaign at: SometimesItsPH.org

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Be Organized: Organizing your medical information is always a good idea, and can help you and your loved ones access critical information in an emergency. Good records will also help to ensure that you and your healthcare team have all the information needed to manage your care.

We’ve prepared the forms below to help you capture your most important health related information. You can find these print-ready forms and worksheets at the end of this Toolkit.

Medical Information Summary: Use this document to summarize your personal information, emergency contacts, medications and essential health information.

Healthcare Contact List: This form will help you keep track of all of your healthcare providers’ information in one place. Share this list with your primary care provider and any specialists you see so they can keep each other informed about diagnoses, changes to your health, procedures and test results.

Medication Log: Use this form to record all medications you take, both prescribed and overthe-counter medications. Note why each medication was prescribed or recommended - even herbal supplements and vitamins. Be sure to update this list every time you start or stop a new medicine. Include medicines you have stopped taking in the last year.

Insurance Information Form: Use this document to keep a record of your current healthcare insurance information.

Family History Record: Family history can be useful in helping your healthcare team identify conditions for which you may be at risk. Use this worksheet to record important medical information about your closest blood relatives.

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Be Informed: Are you turning to the best resources for your healthcare and medical information? Finding the information you need to be an educated and empowered patient can be a challenge, and many people find the sheer volume of information available to be overwhelming.

The materials and resources in this section are designed to help you evaluate the quality of the information you find online and to help point you in the right direction.

Finding Credible Healthcare Information Online Thanks to the internet, you have access to more “information” than ever before, but is all this information credible?

Sometimes, it’s hard to know.

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Do they have appropriate expertise? Can they “speak” with authority? What are their credentials?

Is the data or information based on research and scientific evidence? If yes, can you determine who funded the research? Were articles peer reviewed?

Can you differentiate between opinions and facts?

If the site is presenting content collected from other sources, have they identified the original sources?

Is the data current?

If the information doesn’t match other research on the topic, is it supported by multiple credible sources?

What can a website address tell you?

A website address can tell you a bit about the organization that owns and operates the website. 

".edu:" Published by an organization affiliated with an educational institution ".org:" Published by a not-for-profit organization, such as the Pulmonary Hypertension Association ".gov:" Indicates that the website is run by a government agency ".com:" Generally means the site belongs to a commercial or for-profit organization

Information is only as good as its source, and differentiating “good” from “bad” information is sometimes a matter of judgment. Data, opinions and recommendations can vary – even among credible sources. The following questions will help you critically evaluate the healthcare information you find online.

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Where is the information or data being presented?

Are there any red flags?

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What does the “About Us” page tell you about the organization’s mission and objectives?

What is the purpose of the site?

Who is the site intended for?

How might funding influence the research or other information presented on the site?

Is the source credible?

Ask yourself if the information you are reading is likely to be unbiased, balanced and without hidden motives. Here are some particular points to consider: 

Who are the authors of the information or data presented?

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Sometimes, it’s good to be a skeptic – especially if you see these warning signs:      

Lack of appropriate expertise or credentials Data that seems biased or in conflict with the credible research Data that is outdated Information that seems too good to be true Overt product sales pitches “Facts” with no references

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Seeking a Second Opinion Sometimes it takes a fresh pair of eyes to see a situation in a new way. Second opinions can help you make more informed decisions and to take greater control of your healthcare journey.

Decisions about your healthcare are among the most important you'll ever make, and it's natural to want to have as much information as possible. Still, many of us worry about offending our doctors or health team by asking for a second opinion. Rest assured, most healthcare professionals will understand your desire to be well informed and will support your desire to get a second opinion. Many will even be happy to help you get one. When you ask for a second opinion (or third), you are simply asking for another perspective on your health issues and options. This makes you a more informed consumer.

Why and When Should You Seek a Second Opinion Requesting a second opinion doesn’t mean you don’t trust your doctor. Here are some reasons you may want to consider getting a second opinion: 

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Based on their training, diagnostic tools, and experience, healthcare professionals may have varying approaches to diagnosis. When faced with a hard-to-diagnose condition, it may become necessary to consult a variety of specialists.

No two healthcare providers have the exact same approach. They may apply different types of treatment approaches and styles. Some favor more "wait and see" conservative approaches, while others prefer a more aggressive strategy.

By seeking a second opinion, you increase your understanding of the options available to you.

Talking to Your Healthcare Team about Getting a Second Opinion Telling your healthcare team that you would like to seek a second opinion might be uncomfortable, but don’t let that hold you back. After all, it's your health that's at stake. Here’s what you should do when asking for a second opinion: Copyright © 2015 Pulmonary Hypertension Association

Be honest: Don’t hide your desire or intent to get a second opinion. Your healthcare team may be able to recommend specialists and may even be able to coordinate the sharing of your medical records.

For Example: “Dr. Smith, to ensure that I feel confident in making decisions about my care, I’d like to get a second opinion. Will you give me some suggestions on who you would recommend I see outside your practice? And, can your team help me share my medical records?”

Be respectful: Keep in mind that, like you, your healthcare team is committed to your health – you are all part of the same team. Getting a second opinion shouldn’t be seen as severing ties, so manage the process diplomatically.

For Example: “Dr. Smith, it’s important to me that I feel as informed as possible. This will help me feel more confident in making the decisions you may need me to make.

Before we move forward, I'd like to get a second opinion.”

Be clear and direct: Explain that getting a second opinion is important to you, and will enable you to feel confident about the decisions you’ll be asked to make about your healthcare.

For Example: “Dr. Smith, I appreciate the time you and your staff have spent with me. I am still a little overwhelmed, and I think I need another opinion to ensure that I feel fully informed. ”

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Getting the Most from Your Second Opinion Be organized: Organization is critical. Use the tools in the “Be Organized” section of this Toolkit to ensure that you are well prepared for each appointment.

Be covered: Dealing with unexplained symptoms or an undiagnosed illness means you live with surprises every day. Don’t let unexpected bills or insurance conflicts be one of them! Review the “Be Covered” section of this toolkit to ensure you understand the insurance related aspects of getting a second opinion.

Follow-up: Whenever you get a second opinion, be sure to have the office send a report to your primary care physician and/or the person who provided you with the initial opinion. This will ensure that all of your healthcare providers have the same information.

Once you have received your second opinion, review it with your primary care provider and/or the person who provided you with the initial opinion. When healthcare providers are in agreement, your decisions become more straightforward. When they disagree, you may need a third opinion or may want to discuss your situation with a different type of specialist.

ADDITIONAL RESOURCES There is no shortage medical information online, and it can be hard to know where to begin when you have unexplained symptoms or an undiagnosed illness. These sites may help you get started: 

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So, you’ve made the decision to get a second opinion. Now what? Deciding what type of specialist to consult and deciding who to actually call are important decisions. In addition to speaking with your healthcare provides, these resources will help you find your way. 

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US Department of Health and Human Services Health Finder, US Department of Health and Human Services, MedlinePlus Guide to Healthy Web Surfing, US National Library of Medicine NIH Undiagnosed Diseases Program, National Institutes of Health National Organization for Rare Diseases, NORD

Choosing a Doctor or Health Care Service, US Library of Medicine, National Institute of Health Find and Compare Doctors, Hospitals & other Providers, Medicare.gov How to Find Health Care Provider Information, Healthcare.gov How to Find a Disease Specialist, National Institute of Health, Office of Rare Disease Research Specialty Definitions, US Site for Medicare

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Be a Partner in Your Care You probably advocate for yourself everyday - at school, at work, at home. No matter where you are, you won’t get ahead without speaking up. As a patient, it is important for you to advocate for yourself, which means making sure your needs, perspectives and goals are heard.

In the healthcare environment, you advocate for yourself best when you are prepared, informed, collaborative and assertive. This section of the Toolkit contains tips and strategies to help you partner effectively with your healthcare team.

Preparing for Your Visits You are a busy person, and so are the healthcare professionals you will meet. You deserve to get the very most out of the limited time you have together, whether you are seeing your primary care practitioner or visiting a new specialist for the first time.

It may be tempting to just wing it, but spending time preparing for your medical visits will ensure you don’t forget to ask important questions.

Likewise, taking notes during and after your visits will help you remember key points from your discussions. The forms below will help you keep track of questions and concerns in advance of your visits, and to help you track your visits and followup questions.

Appointment Prep Worksheet: Use this worksheet to prepare for each appointment by summarizing any changes you've noticed since your last visit. Use the space provided to capture any questions you'd like answered during the appointment.

Appointment Summary Worksheet: Review this worksheet with your healthcare providers at the conclusion of each appointment to ensure that you understand important instructions and treatment plan changes. Keep copies of each summary

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worksheet so you have a detailed and accurate record of your healthcare history.

Describing Your Symptoms Symptoms are the clues your healthcare team will use to decode your health. What you think may be unimportant or just a coincidence, could be the missing piece that leads to your diagnosis.

Diagnosing an illness - particularly one that is hard to diagnose like yours - is a complex process that requires a partnership between you and your healthcare team. It’s important to keep in mind that diagnosis is sometimes a process of exclusion, which means you may find out what isn’t wrong long before you find out what is!

Your healthcare provider may use of a variety of diagnostic methods including algorithms, pattern recognition and hypothesis testing. Regardless of the approach, your healthcare team will need your help. Specifically, your team will count on you to describe symptoms effectively and to be honest about your personal and medical history.

You need to be able to describe your symptoms in order to make sure your medical team has all the information they need to help you. Your first step is to track your symptoms, which you can easily do using our Symptoms Tracker.

Keep in mind that how you describe those symptoms is critical to your healthcare professionals’ ability to accurately diagnose your condition. When you are describing your symptoms be sure to:  

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Start at the beginning and discuss your symptoms chronologically Be specific about when, where, how often the symptom occurs, how long they have been occurring and how they have changed over time.

Describe how the symptoms feel, using specific descriptions (ex: “It feels like someone has put a weight on my chest” or “I have to gasp for air and feel like I am going to suffocate.”).

Use your own words. You may think you know what words the doctor might want to hear, but using "medicalese" may create more confusion than clarity.

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Describe what, if anything makes the symptoms better or worse. Note if you have been able to associate your symptoms with any events or changes in your lifestyle or situation.

Disclose if you are being treating for any conditions, what medications (including nonprescription) you are taking, or if you have had any recent medical or dental procedures.

Describe how the symptoms impact your daily life and activities – be specific (ex: “I can no longer walk up the stairs every time the baby cries, so now the baby naps on the first floor.” or “I have to rest after I walk from my car to the office, which creates problems for me at work.”)

Be concise: The average medical appointment lasts less than 15 minutes.

Most importantly, be honest. Now is not the time to be shy! The ability of your healthcare team to make an accurate diagnosis is dependent having all the information you can provide – even when it’s embarrassing.

Meeting a Provider for the First Time You wouldn’t hire a new babysitter or a contractor without an interview, and not every healthcare professional's style of care will suit you as a patient.

Always take the time to ask questions of a new provider to make sure you’ll be comfortable with them and their approach to care.  

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Ask about their approach to diagnosis: What can you expect?

Ask about their practice: What types of conditions do they typically treat? What experience do they have with difficult to diagnose conditions?

Ask about their communication preferences and channels: Can you reach them via email or phone? What can you expect in terms of response time?

Tips for Getting the Information You Need These tips can ensure you get the information you need and help to build a solid partnership with all of your healthcare providers: Ask for an explanation of any tests ordered: What is the test and what can you expect before, during and after? Do you need pre-authorization? What will the test tell them?

Ask when and how you can expect to receive test results: Will the office call you?

Will results be sent to your primary care practice? Will you receive a written report?

Communicating with Your Healthcare Team Your relationship with your healthcare team is a two way street. Just as they need you to provide information about your symptoms and medical history, you need them to explain the steps they are taking to diagnose your illness and any recommendations they make.

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Ask for explanation of any treatment, lifestyle change or medication recommended: Why have they made the recommendation? Are the possible side effects? Will you need pre-authorization?

Ask what to do or what you should expect next: When should you schedule your next appointment?

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Tips for Maximizing Your Appointment Time and Ensuring You Feel Heard It is critical that you feel heard in your interactions with all of your healthcare providers. Here are a few tips to ensure you communicate effectively, as well as tips for what to do if you don’t feel heard.

Following these steps will also help you make the most of your appointment time. 

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Be prepared: Preparing for your appointment in advance will help ensure you are able to share all the important information with your doctor.

Prioritize your concerns and be specific: Like you, your providers are very busy and may not have a lot of time to spend with you. Discuss your most significant concerns first and be specific. If you are interrupted before you finish discussing your concerns, politely ask that you be allowed to finish.

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Clarify what you hear: Ask for an explanation of any term or word that you do not understand.

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Slow things down: If things are moving too fast - maybe you don't fully understand what you are being told or you haven't been able to fully describe your concerns - ask for more time.

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Be insistent if it feels like your provider doesn’t understand: You know your symptoms better than anyone else. Keep your symptom tracker current so that you can talk about your symptoms with certainty.

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Be direct: If you don’t feel heard, or if you feel that your symptoms are being minimized, say so diplomatically.

Ask. Then, ask again. There are no stupid questions. Don't be afraid to ask questions until you are fully satisfied that they have been answered adequately.

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ADDITIONAL RESOURCES Healthcare terminology is extremely technical and can be difficult to understand. These resources will help to demystify some of terms your healthcare team might use. 

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Searchable Medical Dictionary, US National Library of Medicine, National Institute of Health Medical Tests and Procedures, the Mayo Clinic Understanding Your Medical Tests, American Association of Clinical Chemistry

SUGGESTED READINGS S

Looking for more tips about communicating to your healthcare team? Check out PHA's "From "Me" to "We": Communicating with Your Healthcare Team.

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Be Sure You’re Covered: Understanding and Navigating Health Insurance

Troubleshooting Common Insurance Problems Insurance companies can be particular when it comes to approving treatment and paying claims. If you find that you are facing obstacles accessing treatment and/or using your benefits, don’t wait to take action. Get started now by learning how to manage Common Insurance Problems and Challenges.

Understanding Social Security For many of us, navigating the world of insurance can be a challenge. This section will provide you some basic information about insurance and help you anticipate and troubleshoot common insurance-related challenges.

Depending upon your situation, you may find yourself working with government health and disability insurance programs. PHA has two great resources that can help:

Health Insurance 101

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To navigate the insurance system most effectively, it's important to understand the terms and processes used by insurance companies. There are many different types of insurance payers, plans and programs in the US, each catering to different populations with different needs. To learn more about your current or potential insurance plan, visit PHA's Types of Insurance and our Glossary of Insurance Terms pages.

Understanding Your Rights Navigating the insurance system is not a passive activity. Getting the coverage you need and may be entitled to requires that you understand your rights. Learn more about your rights at PHA’s Understand Your Insurance Rights page.

Tips for Communicating with Your Insurance Company Understanding your benefits and knowing your rights are important first steps, but communicating effectively with your insurance company is equally important, and will increase the chances of having your care covered. To learn how to communicate more effectively review our Easy Tips for Communicating with the Insurance Company.

Copyright © 2015 Pulmonary Hypertension Association

Medicare Overview Social Security Guide

ADDITIONAL RESOURCES You don't have to go it alone! There are organizations and online resources that can help you identify financial assistance and provide help related to your insurance and disability related issues. Here are a few: Caring Voice Coalition offers financial support to eligible patients through its Financial Assistance Program, which may cover all or a portion of a patient’s out-of-pocket expenses.

The Patient Advocate Foundation provides direct financial support to insured patients, including Medicare Part D beneficiaries through its Co-Pay Relief Program. Eligible patients must financially and medically qualify to access pharmaceutical copayment assistance. The program also offers call counselors who personally guide patients through the enrollment process.

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Be In Control When you aren't feeling your best and you are dealing with unexplained symptoms that are impacting your life, you may wish the world would just stand still. Unfortunately, it won't. The people around you - family, friends, and coworkers - will continue to have expectations of you and may not understand what you are going through. This section of the Toolkit has been designed to help you cope with the everyday challenges you may face. These tips will help you get on with the business of living your life.

Managing Your Illness at Work Dealing with an undiagnosed disease and experiencing unexplained symptoms can affect you on the job, impacting your schedule, attendance or performance. You may already be nervous about your job security. While every workplace is different, here are some common strategies that can help you manage at work.

Understanding Workplace Benefits and Policies Take the time to read everything you can about your employer's leave policies and employee benefits. Pay specific attention to: 

Time Off Benefits: Review vacation, sick time, paid time off, Family and Medical Leave, unpaid leave and any other leave benefits your employer may offer.

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Your Health Insurance Benefits: Be sure you understand what type of insurance plan you have, and what coverage is - and is not included.

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Other Insurance Benefits: In addition to your leave benefits, you may also be eligible for short and longer term disability insurance payments in the event you cannot work.

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Your Employee Assistance Program Benefits: Many employers offer employee assistance programs, which may include referral resources, mental health counseling, legal and/or financial advice.

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Employee Discount Programs: You may also be eligible for healthcare or fitness related discounts, which might come in handy.

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Alternative Work Schedule Options: Find out whether your employer allows alternative work schedules and, if so, under what conditions.

Tips for Talking to Your Employer When you are sick, but don’t have a diagnosis or prognosis, having discussions with your employer can be difficult. You are not required to tell your employer anything about your health situation. However, if your health condition is getting in the way of doing your job, it might be a good idea. If you do decide to discuss your health with your employer, consider the following tips: Disclose before you have performance problems. Often people wait until they have received a poor performance rating or review before discussing their health issues with a supervisor. It’s best to have conversations surrounding any potential negative impact on your work productivity before it is noticed by your supervisors.

Consider talking to your human resources representative. He or she may be able to review your company's policies with you, and help you decide whether it's necessary to inform your supervisor. Your employer doesn’t need to know what is wrong with you – your employer just needs to understand what limitations you have that impact your job performance.

Provide appropriate authorizations and required information. Your employer may need to get information from your healthcare providers to administer sick leave, workers' compensation, wellness programs or insurance programs on your behalf. However, your healthcare provider cannot disclose information to your employer without your authorization.

P a t i e n t S e l f - A d v o c a c y T o o l k i t | 11 Propose alternatives and be creative. If you are having a difficult time at work, propose alternatives to your employer. While it may seem harsh, your illness is not your employer's problem.

You were hired to do a job, and getting it done is your employer’s primary concern. If your health conditions are making it difficult to work your normal schedule or to perform your job as you normally do, you may be able to modify your work schedule or work processes.

Discuss any work related issues you are having with your healthcare provider. He or she may be able to identify work restrictions or accommodations that will help. If you decide to request Family and Medical Leave or to request an accommodation under the Americans with Disabilities Act, your healthcare team will need to provide specific information to your employer.

Focus on what you can do. Even the most understanding supervisor or co-workers can become weary of hearing: “I can’t.” Change the conversation by focusing on what you can do.

Understanding Your Rights As a patient, employee and consumer, you have a variety of protections that can help you access the care and resources you may need as your diagnosis story unfolds. This section of the Toolkit is designed to provide a brief overview of some of the laws and regulations that may be relevant to you. Of course, every individual situation is different and this Toolkit is not intended to provide legal advice.

Health Insurance Portability and Accountability Act (HIPPA) HIPPA was enacted to protect the privacy of your health information. In general, HIPPA outlines your right to know about and control how, when and why your health information gets used. This includes the right to get copies of your medical Copyright © 2015 Pulmonary Hypertension Association

records and other health information, and generally requires that you provide consent before your health information can be shared. Note that HIPPA generally applies to the information that your healthcare providers and insurers can share, and doesn't prevent your employer from asking you for a doctor’s note or other health information when necessary.

Family and Medical Leave Act (FMLA) In general, FMLA allows you to take up to 12 weeks of unpaid, "protected" (you can't be fired for taking qualified leave) every 12 months due to your own serious health condition (or that of an immediate family member). Depending upon the need, you may take this leave consecutively or intermittently (i.e., one day a week). It is important to note that not all workers are eligible for FMLA leave and you must demonstrate that you (or your family member) have a certified serious health condition. To learn more, visit the Department of Labor's FMLA page. You may also want to check out the law in your state, as some states require or provide additional leave benefits.

Americans with Disabilities Act (ADA) The ADA prohibits discrimination on the basis of disability in employment, state and local government programs and in other settings. Depending upon the situation, your health condition may be considered a disability under the ADA. Under the ADA, employers may not ask job applicants about the existence, nature or severity of a disability. Employers may ask you whether you are able to perform the essential functions of a job, but must make reasonable accommodations to allow you to perform your job as necessary (such as providing a refrigerator or freezer for your medications if necessary, modifying your work schedule, etc.).

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Taking Care of Yourself When you are dealing with an undiagnosed illness or unexplained symptoms, all you want are answers. It’s easy to get anxious or frustrated when those don’t come easily. What’s important is that you’re not so focused on getting those answers that you forget to pay attention to your overall health and wellbeing.

We all know that taking care of ourselves - being physically active, eating well and getting enough sleep - is important to good health. The materials below provide practical tools and tips to help you take good care of yourself, even as you seek more answers about your unexplained symptoms.

As you monitor yourself or someone you love for depression, it’s important to look for changes in behavior that last for more than a few weeks.

Here are some key symptoms of depression: 

Feeling sad, empty or numb. Depression may feel like a dark cloud that can make everything seem hopeless. Pay attention to how long these moods last and how often they occur.

People suffering from depression typically experience feelings of sadness or hopelessness on a near daily basis.

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Diminished interest in activities.

Depression can make you lose interest in activities that you once enjoyed. While it’s normal to be less interested in activities that have become more difficult because of your symptoms, take note if you find yourself less interested in activities you are still capable of doing.

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Significant change in weight or appetite.

When depressed, some people find comfort in food, while others lose interest in eating altogether. Be aware of your tendencies, and pay attention to weight losses, gains and significant fluctuations in appetite.

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Sleep disturbances. Most people suffering from depression report unusual sleep patterns.

Some people sleep much more than they normally would, while others sleep much less.

Others experience a disturbed sleep cycle, staying awake all night and sleeping all day.

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Fatigue or loss of energy. Depression can drain your energy, and make it impossible for you to go about your daily activities. Fatigue may present itself as an inability to keep up with everyday grooming, work, shopping or household chores.

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Feelings of worthlessness or excessive guilt. These feelings are often inappropriate to the situation. Someone who is depressed might feel guilty for things they have no control over, including getting ill in the first place.

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A feeling of being completely alone.

People suffering from depression frequently

Signs of Possible Depression Living with an undiagnosed condition can introduce a host of daily challenges that may put you at increased risk of depression. It’s important to remember that depression, although serious, is a treatable illness that many people have experienced and learned to successfully manage.

Despite its being very common, many people have misconceptions about depression. Because depression is difficult to see, some people don’t believe it’s real. They may not be able to understand why a person who’s depressed can’t just “get over it” or “shake it off.”

In reality, depression is a real illness and it can be a dangerous one. Depression is associated with higher rates of mortality, pain and physical illness.

Aches and pains, digestive problems, fatigue, trouble sleeping, and changes in weight and appetite are all problematic side effects of depression that may interfere with your already compromised health.

So how do we know if we’re experiencing a temporary bout of the blues or something more serious? This is an important distinction to draw, as treatment for depression typically requires professional intervention. If you suspect that you may be depressed, a psychologist or physician will look for a collection of symptoms that are present over a significant period of time.

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P a t i e n t S e l f - A d v o c a c y T o o l k i t | 13 isolate themselves and pull away from loved ones. Take note if you find yourself avoiding conversations or wanting to be alone more than usual.

Recurrent thoughts of death. This symptom can look very different from person to person. Thoughts about death may be very explicit, or they may be more covert. People might engage in risky behaviors, like not taking medications as prescribed, or make passing statements that indicate they wouldn’t care if they weren’t alive. If you or someone you love is thinking about suicide, visit your local emergency room or call the National Suicide Prevention Hotline at 1-800-273-TALK.

Treating Possible Depression

relationships. Reach out to friends and family to get support.

Be kind to yourself: Resilient people are as kind to themselves as they are to others. Remind yourself what you like about yourself. Forgive yourself. Set realistic goals.

Expect and accept change: Change is one of the few things we are guaranteed in life, yet we often work very hard to resist it. Resilient people are capable of adapting to new conditions and uncertainty. One way to become more accepting of change is by anticipating it and planning for it in advance. While you won’t be able to anticipate every possible change to come your way, you can become more accepting of change by imagining what you’d do in a variety of scenarios.

Depression, although sometimes difficult to recognize and understand, is an illness like any other, and symptoms will not go away on their own without attention and intervention. When depression begins to interfere with everyday functioning (sleeping, eating, working or socializing), that’s a good indicator that it’s time to seek the help of a mental health professional.

Control what you can: Research also shows that resilient people are focused. They take stock of what they can control and then take steps to actively improve those areas of their lives. Eat regularly and nutritiously. Exercise. Go to doctors’ appointments and follow your medical team’s directions. If something prescribed isn’t working for you, call your doctor or nurse. Get massages if you’d like. Get enough sleep.

Just like physicians, therapists have a variety of qualifications and specialties. You may want to seek the help of someone who works regularly with people with chronic illness. The most important thing is to find someone you connect with and trust.

Don’t be afraid to speak or meet with several people before settling on someone you feel comfortable with. Finding the right therapist for you is a process, and it’s worth the time and effort.

Integrate more of what you love into your life: Resilient people share the belief that while life is complex, it’s also filled with opportunities.

Brainstorm things that bring you peace, joy and happiness and incorporate those activities into your daily life. Take steps to reduce your exposure to people and things that make you feel badly.

Building Resilience

Managing Stress

Resilience refers to an individual’s ability to bounce back from adversity, stress or trauma. It’s not something that you have or don’t have – it’s something that you can learn and develop. Here are some things you can do to build resilience and improve your overall emotional health:

Stress is a part of the human experience. It accompanies life changes, both happy and sad, from the excitement of planning a wedding to the devastation of losing a loved one. We all experience some levels of stress in our day-to-day lives.

However, when combined with dealing with an undiagnosed illness or unexplained symptoms stress can be especially difficult to manage.

Build a caring support network: Research shows that one of the most important factors in building resilience is maintaining caring and supportive

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For some people living with undiagnosed illness or unexplained symptoms, stress can come from

P a t i e n t S e l f - A d v o c a c y T o o l k i t | 14 finding it’s difficult to complete ordinary tasks like running errands or cooking dinner. Others become frustrated by misdiagnoses and the uncertainty of knowing that something is wrong, but not knowing what. Still, others deal with the stress of having friends and family members who doubt they are truly sick.

Many people dealing with undiagnosed illness learn to manage stress better over time by developing coping strategies that tend to their mind, body and spirit. What follows are a variety of coping methods that have worked for others. Stress is very subjective; what causes stress in one person may bring joy and pleasure to another. As such, what relieves stress also differs from person to person.

Accept that stress is inevitable: One way of coping with stress is by learning to accept its inevitable presence in your life. Even the most laidback among us encounter occasional frustrations.

Rather than trying to eliminate stress entirely, accept that you’ll face some unexpected hurdles every day. Some of these challenges may be everyday annoyances and some may be much larger obstacles. However, if you can adjust your thinking to acknowledge that challenges are bound to present themselves, it’s easier to interpret potentially stressful situations as challenges to be overcome or changes to be accepted.

Take stock: Consider taking stock of the things in your life that cause you stress. You can even make a list of common stressors you experience: work commitments, a particular relationship, having only 20 minutes to grab lunch during the day, etc.

Be as specific as you can. Then, review the list and determine which stressors are within your control, and which are outside of your control. While you may not be able to control a deadline at work, you can control how often you speak to an emotionally draining acquaintance.

Brutally cut your to-do list: Make a personal commitment to treat yourself well by setting realistic goals and prioritizing tasks that truly matter to you. Many people hold themselves to high standards, and not reaching a goal can leave them feeling discouraged. Be forgiving of yourself in regard to meeting self-imposed expectations.

Imagine a close friend in your position. Would you chastise her for not accomplishing everything on her to-do list, or would you understand that she is Copyright © 2015 Pulmonary Hypertension Association

working hard to do the best she can? Extend this same kindness to yourself.

Prioritize: Make a list of everything you want to do and rank the activities in order of importance. Ask yourself if the items at the bottom of the list are truly necessary. If they aren’t, cross them off the list! Part of adjusting goals and prioritizing tasks can include having to tell people “no” sometimes. If saying no is something you have trouble with, take some time to understand why. Are you afraid of letting people down? Identifying what is behind your inability to say no may help you develop realistic strategies for asserting yourself. Saying no takes practice, but those close to you will understand if you communicate directly and honestly with them.

Schedule in stress relief: Relaxation and stress relief rarely make it to the top of any busy person’s to-do list. This is why it makes sense to set aside time specifically for relaxation and for activities that reduce your stress. Some people enjoy gardening, a nice nap, yoga, or spending time with a loved one. Think about what leaves you relaxed, but also recharged. What can you do that directs energy toward you and helps you feel rejuvenated?

Sleep well, feel better: We all know that a good night’s sleep can work wonders. Getting enough rest will help to ensure that you have the energy to deal with stressful situations when they present themselves. Check out the PHA’s tips for getting a great night’s sleep.

Be good to your body: Reducing stress means being proactive about things in your life you can control. To an extent, your physical health is one of those things. Cultivating habits that directly affect and support your physical health can do wonders for reducing mental stress. Avoid smoking, excessive drinking and binging on junk food.

Physical exercise is another well-known stress buster.

Sometimes talking to family and friends just isn’t enough. If stress is getting in the way of everyday functioning, talk to a therapist, clergy person, or your doctor.

P a t i e n t S e l f - A d v o c a c y T o o l k i t | 15

Maintaining Healthy Relationships It's important to remember that when you are sick and stressed those who care about you are impacted, too. You may find yourself taking your frustration out on your family members and loved ones - the people you need the most. And your loved ones may become frustrated if you aren’t able to help as much with housework, carpooling, etc.

So, what can you do to maintain healthy relationships and ensure that you and your loved ones are mutually supportive?

The Pulmonary Hypertension has prepared a number of coping guides designed for individuals dealing with a chronic illness. Although these guides were prepared with the particular needs of individuals with Pulmonary Hypertension in mind, the guiding principles are universal:    

heard this at least once, and it's especially frustrating to hear from the healthcare professionals you trust to help you.

There are a few strategies you can use to ensure that your healthcare provider takes your symptoms as seriously as you do. 

Be assertive: If you feel your healthcare provider is missing something, or not taking all aspects of your situation into account, ask for more time or a more extensive exam. Using the forms and resources in this Toolkit will ensure that you are organized and are able to share a complete medical history with your team.

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Be prepared: Use our Toolkit resource to prepare for your healthcare visits with as much care as you would for any important appointment. If you aren't prepared to be specific about your symptoms - and the impact of your symptoms on your life - your healthcare providers may not fully understand your situation.

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Seek an additional opinion: When you are dealing with a difficult to diagnose illness, you may have to seek the input and expertise of several specialist healthcare providers - and that is okay. Your primary healthcare team cannot be expert in everything, and the root cause of your symptoms may not be within your team's area of expertise. For tips on second opinions, refer to the Getting a Second Opinion section of this Toolkit.

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Don't second guess yourself: When faced with people who appear to doubt your credibility, question your symptoms or have no experience with your symptoms, it is easy to lose confidence. You may even begin to question whether your symptoms are real yourself. Remember: you know your body better than anyone else, and you know what is normal for you and what is not.

Caring for Your Relationship with Your Partner Managing Stress - For Caregivers Helping Your Child Cope Coping as a Caregiver

Being a caregiver can be stressful, especially for spouses and partners who live with your illness and perhaps the feelings and moods that go along with it - everyday. You can help to minimize their stress by actively seeking out additional sources of support. Consider the other people you can vent to or talk to about your feelings: A religious advisor, a trusted friend or even a counselor or social worker can also offer empathy and perspective.

Dealing with Common Issues Dealing with the uncertainty of having an undiagnosed disease is tough, but when others question your credibility, a difficult situation becomes even more stressful. Although every situation is different, there are some common mindsets and anxieties (including your own!) you may encounter living with an illness without a label. We’ve provided strategies that can help you be prepared and face them head on.

“My Doctor Thinks It’s All in My Head “ "It's all in your head." Almost everyone who has dealt with a difficult to diagnosis condition has Copyright © 2015 Pulmonary Hypertension Association

You Don’t Look Sick to Me Along with "It's all in your head," you may find that friends, co-workers and even family members make this statement when they can’t “see” what's wrong

P a t i e n t S e l f - A d v o c a c y T o o l k i t | 16 with you or don't have a "label" for what is wrong with you. You may even get the sense that they don't believe you or think you are exaggerating. In the face of this type of reaction, it's easy to become discouraged or to start doubting yourself.

So, what can you do to build understanding and ensure you get the support you need?

Be specific about how you feel, and the impact of how you feel on your ability to function. While you know what you mean when you say you are "too tired" or "feel crappy," that doesn't help others understand specifically how you feel. By using more descriptive language, and comparing how you currently feel with how you have felt in the past, you help others truly understand the impact your symptoms are having.

Actively engage others in the process. People who care about you want you to feel better and to get the diagnosis or treatment you need. In fact, those who love you may feel just as helpless as you do at times. You can help them help you by engaging them in your search for answers. This could include asking them to help with research, tracking your symptoms or even attending healthcare appointments with you.

Be empathetic with others. When you're sick, you're not the only one impacted. In addition to being concerned about you, friends, family and even co-workers may have to take on additional responsibilities or duties. Just like you, they may long for the "way things used to be" or miss the "old you."

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Practice reflective listening. Repeat back a portion of what you have heard to ensure you understand.

Acknowledge the emotions and feelings that have been shared (you don’t have to agree or disagree, just acknowledge).

Use “I statements.” For example, “I feel hurt when you don’t ask for my input. Please let me share my feelings.”

Let go of the expectation that friends and family will all understand all the challenges of living with an undiagnosed illness. Some people in your life may not be capable of adapting to the uncertainty or changes that your unexplained symptoms may present. It’s OK to prioritize your time with the people who make you feel supported.

“I'm afraid I'll never know what's wrong!”

By now, you probably already know that diagnosis is not always a quick process. No matter it might take, you are still needs and deserves the best care possible. In addition to using the materials and strategies outlined elsewhere in this Toolkit, here are some final suggestions.

“They Just Don’t Understand”

Stay Informed: By this point, you have probably done a lot of research. You probably found some useful information, as well as a lot of information about the diseases or conditions you don't have. Research is a never ending process, so don't stop looking for answers. You may even find out about new diagnostic tools and approaches.

Living with an undiagnosed illness is difficult, and when others don't understand, it can also be isolating and frustrating. You can't "make" people understand, but working to improve communication can increase understanding, uncover unrealistic expectations and aid in problem solving. Effective communication is about building rapport, understanding and trust. Here are some steps you can take:

Stay in Touch: To ensure you get the care you deserve and are able to take advantage of treatments to help manage your symptoms, it is important that you maintain regular contact with your healthcare team. Both you and your healthcare team should keep track of your symptoms and any changes that might offer new clues. It is always possible that new information or new tools will be able to help with your diagnosis.

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Share your understanding of the other person’s perspective and check for your part in any miscommunication.

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P a t i e n t S e l f - A d v o c a c y T o o l k i t | 17 Exploring New Coping Strategies: You are adjusting to a “new normal” and exploring new coping strategies may be helpful including: 

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Talk to a mental health professional: It's not uncommon for people dealing with undiagnosed to suffer from depression or anxiety. Sometimes it's not enough to talk to friends and family, and a trained professional can provide value insights.

Build new support networks: Whether you do it virtually or in person, expanding your network has the potential of providing you with additional perspectives, support and ideas.

comprehensive outreach programs and services aimed at financial, emotional and educational support.

SUGGESTED READINGS 

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ADDITIONAL RESOURCES If you’d like to learn more about your rights, visit these sites for more information: 

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Understanding Your Health Information Privacy Rights, Health and Human Services Office of Civil Rights Speak Up. Know Your Rights, The Joint Commission Family and Medical Leave, US Department of Labor Disability, US Government's comprehensive resource on disability Accommodation Information by Disability: A to Z, Job Accommodation Network

If you’d like assistance locating the right mental health professional for you, ask for recommendations from friends and family, your medical team and visit: 

American Psychological Association's Psychologist Locator, American Psychological Association.

There are a variety of organizations offering help and resources including: Family Caregiver Alliance has long been recognized as a pioneer in health services. FCA supports and sustains caregivers with national, state and local programs and resources.

Caring Voices Coalition empowers patients who live with a life threatening chronic disease through Copyright © 2015 Pulmonary Hypertension Association

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Defining the New Normal: A Guide to Becoming More Than Your Diagnosis by Colleen Brunetti Why Can’t I Make People Understand?

Discovering the Validation Those with Chronic Illness Seek and Why by Lisa Copen Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness by Paul J. Donoghue and Mary Elizabeth Siegel You Don’t Look Sick! Living Well with Chronic Invisible Illness by Joy Sela Can You Hear Me Now: (or do I need to yell into your stethoscope?) by Cynthia S. Brown

PATIENT SELF-ADVOCACY TOOLKIT MEDICAL SUMMARY this qUarterly .

Last updated:

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PATIENT INFORMATION Name Home # D.O.B.

ALLERGIES

Email Cell #

Text

Use this space for any health information that emergency healthcare providers should know about you or your health.

Address

Check here if you are currently taking blood thinners.

EMERGENCY INFORMATION PRIMARY CARE PROVIDER AFFILIATED HOSPITAL PREFERRED PHARMACY SPECIALIST SPECIALIST PERSONAL CONTACT

OFFICE # HOSPITAL # PHONE # OFFICE # OFFICE # CONTACT #

RELATIONSHIP:

HEALTH CONDITIONS Pulmonary arterial hypertension (PAH)

Condition: Condition:

Date dx: Jan. 2014 Date dx: Date dx:

Condition: Condition: Condition:

Date dx: Date dx: Date dx:

CURRENT MEDICATIONS (also see Medication List) Rx: Rx: Rx:

Dosage/Amt per day: Dosage/Amt per day: Dosage/Amt per day:

Rx: Rx: Rx:

Dosage/Amt per day: Dosage/Amt per day: Dosage/Amt per day:

PAST SURGERIES

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IMPORTANT DOCUMENTS

U pdate

CRITICAL HEALTH INFORMATION

PATIENT SELF-ADVOCACY TOOLKIT HEALTHCARE CONTACT LIST Type of Care

Name

Address

Phone

Fax

Email

Doctor: Nurse: Physician’s Assistant:

Specialty Care Specialty Care Pharmacy Dental Provider Eye Care Provider Physical or Other Therapists Other

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IMPORTANT DOCUMENTS

HEALTHCARE TEAM CONTACTS

PATIENT SELF-ADVOCACY TOOLKIT MEDICATION LIST STRENGTH OF EACH DOSE

DOSES AT A TIME

FREQUENCY

PRESCRIBER

START DATE

STOP DATE

Example: Amoxicillin

250 mg

1 pill

3 times daily

Dr. Jones 310-225-5565

5/3/2011

5/17/2011

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IMPORTANT DOCUMENTS

MEDICATION NAME

PATIENT SELF-ADVOCACY TOOLKIT INSURANCE FORM Carrier ID #

Group # Plan Type (ex. PPO, HMO, etc.)

Customer Service # Case Manager #

Plan Year Start/Stop Date What do I use this for?

Customer Service # Case Manager #

Plan Year Start/Stop Date What do I use this for?

Customer Service # Case Manager # Notes:

Plan Year Start/Stop Date Pharmacy #

SECONDARY INSURANCE INFORMATION Carrier ID #

Group # Plan Type (ex. PPO, HMO, etc.)

PRIVATE PRESCRIPTION PLAN OR MEDICARE PART D INFORMATION Carrier Group # ID # Phone # Private Plan Name/Medicare Part D Plan

ORIGINAL MEDICARE AND MEDIGAP INFORMATION Medicare Carrier Medicare Claim #

Medicare Group # Medicare Type/Part[A, B]

Phone # Medicare Customer Service #

Medicare Case Manager # Plan Year Start/Stop Date

Medigap Carrier Medigap Claim # Notes:

Medigap Group # Medigap Type/Part[A, B]

Medigap Case Manager # Medigap Customer Service #

Plan Year Start/Stop Date

Phone # Customer Service #

Case Manager # Plan Year Start/Stop Date

MEDICARE PRIVATE PLAN (PART C) INFORMATION Carrier Claim #

Group # Plan Name

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IMPORTANT DOCUMENTS

PRIMARY INSURANCE INFORMATION

PATIENT SELF-ADVOCACY TOOLKIT FAMILY MEDICAL HISTORY Patient Name: _____________________________

Sex: _______

Last Updated: ___________________________

Ethnicity: _______________________________

Street Address: __________________________ Spouse/Partner Name: _______________________

Date of Birth: __________________________

Occupation: ______________________________________________________

City, State __________

Zip Code ____________

Date of Birth: ________________

Phone Number: __________________________

Sex: _______

Ethnicity: ____________________________

Biological Brothers/Sisters and their Children

Date of Birth

Sex

Current Health

Children (age & sex)

___________________

__________

______

___________________________________

_________________________________________________

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Biological Mother Name: _______________________________

Maiden Name: ____________________

Date and Place of Birth: ________________________________

Ethnicity: _________________________

Current Health/Health Problems: ______________________________________________________________________________________________ If deceased, age at death and cause: ___________________________________________________________________________________________ Mother’s Siblings and their Children

Sibling Name

Date of Birth

Sex

Current Health

Children (age & sex)

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___________________________________

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___________________

__________

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_________________________________________________

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MEDICAL RECORDS

Sibling Name

PATIENT SELF-ADVOCACY TOOLKIT FAMILY MEDICAL HISTORY II Maternal Grandfather Name: _______________________________

Date and Place of Birth: ________________________________

Ethnicity: _________________________

Number of Brothers: _____

Number of Sisters:_____

Current Health/Health Problems: ______________________________________________________________________________________________ If deceased, age at death and cause: ___________________________________________________________________________________________ Maternal Grandmother Name: _______________________________

Date and Place of Birth: ________________________________

Ethnicity: _________________________

Number of Brothers: _____

Number of Sisters:_____

If deceased, age at death and cause: ___________________________________________________________________________________________ Are there any other health concerns on the maternal side of the family not yet mentioned? ___________________________________________________________ __________________________________________________________________________________________________________________ Biological Father Name: _______________________________

Family Name: ____________________

Date and Place of Birth: ________________________________

Ethnicity: _________________________

Current Health/Health Problems: ______________________________________________________________________________________________ If deceased, age at death and cause: ___________________________________________________________________________________________ Father’s Siblings and their Children

Sibling Name

Date of Birth

Sex

Current Health

Children (age & sex)

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___________________

__________

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_________________________________________________

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MEDICAL RECORDS

Current Health/Health Problems: ______________________________________________________________________________________________

PATIENT SELF-ADVOCACY TOOLKIT FAMILY MEDICAL HISTORY III Paternal Grandfather Name: _______________________________

Date and Place of Birth: ________________________________

Ethnicity: _________________________ Number of Brothers: _____

Number of Sisters:_____

Current Health/Health Problems: ______________________________________________________________________________________________ If deceased, age at death and cause: ___________________________________________________________________________________________ Paternal Grandmother Name: _______________________________

Date and Place of Birth: ________________________________

Ethnicity: _________________________

Number of Brothers: _____

Number of Sisters:_____

If deceased, age at death and cause: ___________________________________________________________________________________________ Are there any other health concerns on the paternal side of the family not yet mentioned? ____________________________________________________________ __________________________________________________________________________________________________________________ Additional notes: _______________________________________________________________________________________________________ __________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________ _________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________ __________________________________________________________________________________________________________________

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MEDICAL RECORDS

Current Health/Health Problems: ______________________________________________________________________________________________

PATIENT SELF-ADVOCACY TOOLKIT APPOINTMENT, TESTING AND PROCEDURE LOG Date(s)

Location/Facility

Healthcare Provider

Type of Appointment, Test or Procedure

Reason

Example: 2/1/2015

City Hospital

Dr. Sam Jones

Echocardiogram

Shortness of breath

MEDICAL RECORDS www.PHAssociation.org/SelfAdvocacyToolkit

PATIENT SELF-ADVOCACY TOOLKIT SYMPTOM TRACKER your healthcare provider. Together, you can review your progress and make sure you’re getting the most out of your treatment plan.

Example:

Feb. 3 Sunday

Shortness of breath when climbing stairs

What, if any, idea do you have about what may have caused your symptoms? (e.g., unusual foods, activities, events)

Bothered me a lot - had to Worked out for the first rest on stairs halfway up time this year

What did you do about your syptoms? Did it help?

Used my asthma inhaler - didn’t really help

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QUESTIONS AND NOTES

Date & Day Symptoms (swelling, shortness of breath, etc.) How much did these symptoms bother you?

PATIENT SELF-ADVOCACY TOOLKIT PREPARING FOR A MEDICAL APPOINTMENT What unanswered questions do I have from my last appointment? _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________

How have I been feeling since my last appointment? Better? Worse? New symptoms? _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ Are there any other events or changes I want to remember to discuss during my appointment? _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________

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QUESTIONS AND NOTES

What questions have come up since my last appointment? _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________

PATIENT SELF-ADVOCACY TOOLKIT APPOINTMENT SUMMARY WORKSHEET USE THIS WORKSHEET TO CAPTURE KEY POINTS YOU WANT TO REMEMBER FROM YOUR APPOINTMENT.

Date: __________________________

Healthcare Provider: __________________________

Any changes to treatment plan?

No Yes (describe below) _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ Other important notes: _____________________________________________________________________________________ _____________________________________________________________________________________ _____________________________________________________________________________________ Date of next appointment: ________________________________ www.PHAssociation.org/SelfAdvocacyToolkit

QUESTIONS AND NOTES

Reason for appointment: _____________________________________________________________________________________ _____________________________________________________________________________________

PATIENT SELF-ADVOCACY TOOLKIT NOTES

EDUCATION & RESOURCES

PHA would like to thank Actelion Pharmaceuticals US, Inc. for their support in developing the Patient Self-Advocacy Toolkit.

www.PHAssociation.org/SelfAdvocacyToolkit