There are many different kinds of specialists who can help people with PF. This can include:
- Your primary care provider
- A respirologist
- Immune specialists
- Laboratory professionals
- Pulmonary rehabilitation professionals
- Transplant surgeons
- Occupational therapists
- Social workers, psychologists, or psychiatrists
- Acupuncturists and acupressurists
- Yoga teachers
It can be very tricky to find the right person, clinic, or care for your specific circumstances. Read on to see why it can be so hard to find the right care, and to learn tips for overcoming those obstacles.
Reason #1: It can take a long time to realize you have PF.
Often people experience symptoms of PF for several years before receiving that specific diagnosis. Similarly, people are frequently misdiagnosed before they receive the correct diagnosis. There are many specialists you may need to see before receiving the proper diagnosis. This can include pulmonologists, radiologists, rheumatologists, immune specialists, gastroenterologists, and more.
Tip #1: Trust yourself, and don’t be afraid to seek a second opinion.
You know your body best, so don’t be afraid to share what you’re experiencing with your doctor. If you feel like your doctor isn’t helping the way that’s needed, then don’t hesitate to reach out for another professional’s opinion. They most likely will not take it personally, and they want the best for you regardless. No matter how lonely or isolating PF may seem, you are not alone and you deserve the chance to connect with someone who understands what you’re going through.
Reason #2: You might not know what kind of support is available to you.
At first, it can be hard to find support because you don’t even know where to look. Even if you do know which specialists to look for, it can still feel vulnerable or difficult to discuss certain symptoms with them, such as urinary incontinence or mental health concerns. If you’ve heard the common myths about PF, you might not realize there are ways to take control of your health or that there are treatment options available.
Tip #2: Keep track of your health records.
The more information you can share with your doctor, the more informed they can be when making suggestions or decisions. Before you attend an appointment, make a list of the questions you’d like to ask. It can also help to take notes on your health daily, weekly, or monthly. Because there is so much to navigate, we have a separate article with tips about scheduling and recordkeeping.
Reason #3: It can be difficult to find support nearby.
Though there are many reputable clinics and hospitals, it may be difficult to get to them. Some people do not have many options in their area, or the resources to travel far.
Tip #3: Ask for referrals.
Your doctor may know of specialists or resources in your area. Don’t be afraid to ask your doctor to refer you to another professional – whether that’s a rheumatologist, immune specialist, gastroenterologist, or someone else.
Reason #4: Traveling to appointments can be difficult.
Depending on your symptoms, you may have a hard time getting out of the house. If you are using supplemental oxygen 24/7, it can also feel like a hassle to travel anywhere. For some people with PF, it can feel embarrassing or anxiety-provoking to be in public while they are coughing, having difficulty breathing, etc.
Tip #4: Arrange help from others.
Ask a friend or relative to help you get to & from appointments, or get help from paid caregivers. If you can’t find help in person, you may be able to connect with specialists online or over the phone. These days there are more and more options for telehealth available.
Reason #5: Setting up appointments requires lots of self-advocacy skills. It takes courage to reach out for help, and it can be challenging to navigate each clinic’s scheduling system. If you are not tech-savvy or comfortable using computers, it can be extra confusing.
Tip #5: Advocate for your needs. Remember that you deserve to feel safe, seen, heard, and supported. If you aren’t feeling any of those things, it may help to ask a friend or relative to help set up appointments for you and advocate on your behalf. You can also visit our community forum here and sign up for our virtual support groups here. Both places offer lots of encouragement and information.
If you are already receiving care from a specialist you’d recommend to others with PF, please fill out this quick survey. It is anonymous and completely voluntary. Your response will contribute to our growing list of resources for people with PF. And if you have any tips to add to our list, comment below with your ideas!