Just like you, I’ve had my share of good experiences with doctors, and frustrating ones, too. I wish I could share some tips with doctors to help me cope with this awful disease. I’ve asked fellow patients I know online for their input, and they had a lot to share about this very important topic. I bet you do, too. I’ve written the following tips in the form of a letter to our doctors.
I appreciate all that you do. You have sacrificed years of your life to help patients by attending college and medical school, completing your residency, and perhaps undertaking additional training. You most likely have student loans you will be paying off for 10 to 20 years.
You have a difficult job dealing with life and death and many stressors as you meet with patients, deal with insurance companies, run an office, and handle employees and financial concerns. You truly care about your patients, and we are so grateful for all you have been through to become a doctor.
I know we can’t know what it is like to be a doctor, and you can’t know what it is like to have pulmonary fibrosis.
What it’s like to be a PF patient
While everyone is different, we have some common experiences. One day our lives were fine and were going according to plan. We experienced some shortness of breath and other symptoms and looked for help. We didn’t think it was serious, and we hoped for a quick fix.
For some of us, diagnosis happened quickly. But most of us were misdiagnosed over months and even years, losing critical time to try therapies to slow our disease.
Some of us were told clearly about the seriousness of our diagnosis in caring and compassionate ways. Many of us were not told we had a terminal illness and found out on the internet. Others were told abruptly with little compassion. We were in shock and probably unable to ask you questions.
We left your office in shambles. We couldn’t believe the news. We began grieving the loss of our dreams for our future, and the ways our diagnosis would affect our loved ones. We faced having to tell family and friends, attend medical appointments, deal with financial burdens, and learn how to administer oxygen. Even with the support of family and friends, we often feel alone in what lies ahead.
Tips to help us
Treat us as people and not just as a condition. It’s not just our lungs and bodies that are affected. Our emotions, relationships, and ability to cope are stressed, too. It helps when you ask us how we are doing, what questions we have, and what we need.
Listen to us. It helps us so much when you listen to our concerns and take them seriously.
Educate us. We are devastated and desperate to get information about our disease, treatment options, and what to expect as our disease progresses. Please have copies of the “Pulmonary Fibrosis Information Guide” on hand for us to take home. Provide a handout with referrals to counselors, information about oxygen, and links to reputable help online such as the Pulmonary Fibrosis Foundation, the American Lung Association, and Pulmonary Fibrosis News. This information will help to reduce our anxiety and help us cope.
Explain in regular language what is going on in our lungs and bodies. Show us our CT scans and X-rays or draw diagrams to help us to understand more fully what is going on. Explain the symptoms that we might experience as the disease progresses and suggest ways to manage them.
Talk to us about hard things such as acknowledging the severity of symptoms and our impending death. Don’t sweep it under the rug because you’re uncomfortable or tell us it’s too soon to talk about it. Addressing these difficult topics will help us cope with what’s ahead.
Encourage us to do all we can to be as healthy as possible. Give us a referral to pulmonary rehabilitation and explain why exercising can extend our lives. Explain the medications you’d like us to try and their potential side effects.
Please be patient with our struggles and feelings of distress. Your kindness and compassion mean the world to us. Remember that it takes a great deal of strength for us to manage our disease and stay hopeful on a daily basis.
I’d love to hear from you
What did you think of these tips to our doctors? What else would you add? What tip was most important to you?
Please leave a comment below and share with those who could benefit via email or on social media.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.