Self-advocacy includes educating yourself about your diagnosis. It means speaking up for what you need – at home, school, work and with your medical team. No one knows what you are experiencing physically or emotionally better than you do. Health care professionals are essential in helping us understand and interpret symptoms – but translating symptoms into a diagnosis and treatment plan starts with you being able to accurately express what you are experiencing and what you need.
How do I become a better advocate for my health issues?
- Learn more about your health issues by exploring reputable websites and forums that can help you understand your issue through evidence-based studies and research findings.
- Understand your options for treatment:
Evidence-Based Vs. Experimental Treatment: In making treatment decisions, know that your provider may recommend different options at different stages of treatment. Medical providers make recommendations based on scientific research (i.e. Evidence-Based). It is their job to know how a medication is likely to interact with your illness and with any other medications you may be on. It is also their job to know when a combination of medication, therapies and life-style changes is most effective. Sometimes the research only takes us so far and your provider may discuss experimental options being research. Your participation may be a part of what helps turn these treatments into approved therapies. When discussing treatment options with your provider, consider: What does the research say? Is this an approved treatment? Is it a common off-label treatment? When should you start considering experimental treatments. Are there any additional risks to those treatments?
Medication Management: With a chronic issue, your provider will work to manage your symptoms through one or more medications. These medications may change or increase over the course of your treatment. As you manage your illness over time, be sure to educate yourself on the medications your provider is considering: What are the most common medications for this diagnosis? How long should you expect to take it? What are the potential side effects to expect? What are the benefits to your quality of life?
- Educate family and friends on your health, and how they can help you. You, and you alone, fully understand what you’re feeling, but your family and friends can serve as a substantial support network to help you recover from bad days or assist during emergencies. Discuss with those closest to you how you feel and react on a bad day, as it may not always be clear-cut. Create a plan of action (emergency contacts and regimens, medications and dosages, etc.) with family and friends in case they are present during an emergency.
Coping with chronic illness means spending a good deal of time with your provider. Navigating chronic illness with a provider you trust is essential to feeling confident with your treatment plan. Pediatricians and/or Adult Primary Care Providers are there to help you manage your illness throughout your life. They help you to find needed specialists and gather information from all of your providers to look at the health of your whole body and mind. This big picture perspective allows you to make informed decisions about your care now and in the future.
Your medical provider may recommend that other health care professionals join your care team. These may include:
- Physical Therapists – teach patients how to prevent or manage their condition so that they will achieve long-term health benefits.
- Occupational Therapists – help people participate in the things they want and need to do through the therapeutic use of everyday activities.
- Speech Therapists (speech language pathologists) – prevent, assess, diagnose and treat speech, language, social communication, cognitive-communication and swallowing disorders in order to assist day-to-day function.
- Patient educators – make managing of issues such as diabetes easier by helping to develop a plan to stay healthy, and give you the tools and ongoing support to make that plan a regular part of your life.
- Support Groups – communities or groups of people going through a similar experience meeting together to learn about the disease process, talk about their struggles and wins.
- Behavioral Health specialists – help with dealing with changes in mood and anxiety – two things which are common when dealing with a chronic illness. It can be helpful for anyone who has a chronic condition to have a behavioral health provider.
When working with your provider and health care team to help you manage your chronic illness, ask yourself if the providers you meet do the following:
- Make you feel comfortable during your appointment
- Explain things in a way that is easy to understand
- Listen carefully to you
- Show respect for what you have to say
- Know important information about your medical history
- Spend enough time with you
- Give you a chance to ask questions
If you feel your provider or other members of your health care team are not meeting your needs, it’s important to seek other options that will work well for you.
Your provider may have you come in for regular appointments to manage a condition. It’s important to maintain these regular visits in order to discuss key symptoms, concerns or questions. This will help ensure your provider understands how well your illness is being managed, and address any new issues that may come up. The exact symptoms you track will vary from illness to illness and person to person. It may even change throughout the course of your illness. If you are unsure what to keep track of – start with what concerns you most (blood pressure, mood, blood glucose, appetite, fatigue, etc.)
It’s also important to listen to your provider. Listening to your provider’s questions, concerns and advice will help you better understand how to manage your illness. Are they using a lot of long, complicated medical terms? If so, ask them to tell you again and simplify it. Are they talking about a symptom you don’t think is a big deal? Ask what concerns them about this particular symptom and why they feel it is important. Are they giving you a lot of new, overwhelming information at once? Breathe, ask them to slow down, and ask for extra materials to further understand and process it at home.
What questions do I ask?
- I didn’t understand the reason behind <decision>. Could you explain it to me again?
- I am not familiar with <medical terminology>. What does that mean?
- I am feeling <emotion or physical feeling>. Can you help me understand why?
- What should I do if <situation>?