If you have been diagnosed with pulmonary fibrosis, you may be given a lot of information. At times, it can be overwhelming. But learning as much as you can about your condition and taking an active role in your care is vital.
Becoming more informed can help you be less fearful, feel a greater sense of control and decide what treatment options may be best for you. Greater medical literacy may mean patients are more likely to adhere to their treatment plan.
How to Partner with Your Doctor
Taking an active role in your care involves self-management and being a partner with your physician. Even if you have the best doctors, you should be involved in the decision-making. After all, it’s your life. Consider the following suggestions on developing an effective partnership:
Be honest with your doctor: It’s easier for your doctor to help you if you are honest. Being honest involves talking to your physician about your goals and feelings regarding treatment. A treatment plan that works well for one person may not be right for someone else. Being honest also involves admitting your symptoms and compliance to treatment. Compliance includes taking medications as prescribed, following diet and exercise recommendations and following up with your physician regularly. Adherence to a treatment plan involves more than just wanting to take good care of yourself. Outside factors such as financial concerns over costs of copays or medications or transportation issues can make complete compliance challenging. Discuss these barriers with your provider and they will help find solutions. You’re not doing yourself any favors if you’re hiding information.
Take charge of your health: When someone has a chronic disease, such as pulmonary fibrosis, they can feel powerless. But you can still accept responsibility for certain aspects of your health, such as your nutrition, sleep and exercise. Paying attention to your health and body, as well as noting any changes are important steps in self-management.
Become informed: Understanding more about pulmonary fibrosis including symptoms and treatment options will help you make informed decisions. There is no shortage of information a mouse click away but be careful with online medical searches. Not everything you read on the web will be accurate. Instead, ask your pulmonologist to point you in the right direction for reliable information.
Tips for Effective Communication
Effective communication is often the key to successful relationships, and that also holds true for the partnership with your doctor. Consider the following:
- Be precise with the office staff. If you’re leaving your doctor a message or have a question, be clear and concise. It’s important that the office relays the information correctly.
- Consider bringing along a loved one to your doctor’s appointments. A second person can help you remember more of what is said during your office visits.
- Speak up if you don’t understand something. You’re not expected to understand medical jargon. Some doctors are better than others at explaining complex medical information. Don’t be afraid to admit you don’t understand something.
- Write down questions you have before you visit. It will make your visit more productive if you are prepared and thought about what you want to ask.
- Take the time you need. If you feel rushed during your appointment, ask your doctor if there is a better time to ask questions. You may be able to book a longer appointment time in the future.
- Ask about the physician’s preferred method of communication. Some doctor’s offices may use a patient portal, which allows you to access information, request appointments or leave messages 24 hours a day. Other medical practices, may prefer an email to the doctor or even getting in touch the old-fashioned way through a phone call.
Lastly, the old saying “ignorance is bliss” does not apply to managing a chronic disease, such as pulmonary fibrosis. Instead, remaining active and involved in your treatment can help you feel more in control and confident in your care.
Content written by Dr. Jeremy Feldman, an expert in Idiopathic Pulmonary Fibrosis, with contributions by MaryAnn DePietro, B.S. CRT, a licensed respiratory therapist.