Being diagnosed with pulmonary fibrosis is not for the faint of heart. It is a rough road full of fears, losses, and unknowns. It’s difficult getting used to all that comes with this diagnosis, including lots of up and downs, tears, disbelief, and attempts to adjust.
Taking good care of myself makes a huge difference for me. It eases the losses and fears I experience when I’m able to treat myself with the kindness and compassion I would give a friend.
I decided to write about this important topic after being invited to be a guest on a webinar by monARC Bionetworks on Wednesday, Aug. 15 from 10-11 a.m. PST. I’m looking forward to sharing what I’ve learned about self-care since I was diagnosed with PF four years ago.
In this webinar I will share:
- Practical ideas to help you care for yourself on this PF journey
- Ways to talk to yourself with kindness and compassion about what you are going through
- Skills for processing your many-layered emotions, and help with ongoing grief and fears.
This is a hard road that our loved ones and we haven’t been through before. I hope this webinar will be an encouragement for patients and caregivers, too. Please join me! You can register here.
Here’s a sneak peek at some of what I’ll be sharing on the webinar:
Talk to yourself kindly
Most of us get down on ourselves for the struggles, difficulty adjusting, and discouragement we face. It is normal to wish we handled things better, but being hard on ourselves makes us feel even worse. Just yesterday, I was getting down on myself for not getting much done. I felt discouraged and like a failure.
I stopped myself and said: “You are upset and disappointed you didn’t get much done. That’s normal. This doesn’t mean you are a slacker or weren’t trying. It means you are dealing with a serious lung disease that zaps your energy and strength. Some days are better than others, and you are doing the best you can.”
It really helped to talk to myself kindly. I breathed a sigh of relief and was able to move on to something else rather than staying stuck being harsh with myself. Don’t know how to talk to yourself kindly? Don’t worry, I’ll share more ideas during the webinar.
Practice relaxation techniques
Many of us carry stress in our bodies from all we’re going through. Our bodies need our help to shift from a place of stress to calm. Breathing is a natural way to calm our nervous system. When distressed, pause and do some pursed lip or belly breathing to slow your system down. I’ll demonstrate how to do this during the webinar.
Process your emotions
It’s normal to be sad, frustrated, angry, and overwhelmed by all the emotions that come with our diagnosis. Many patients and caregivers struggle with depression because of ongoing stress and grief. I feel these emotions off and on now, but they were especially strong the first year.
As a marriage and family therapist and pulmonary fibrosis patient, I have worked hard to stay in tune with my feelings and actually make friends with them. Believe it or not, God gave us emotions to help guide us, much like a GPS. When we can see our emotions as giving us valuable information to learn and grow from, it helps us take good care of ourselves.
We need to find ways to process our emotions in healthy ways, so we are not taken down by them. When emotionally upset, it helps to:
- Notice your emotions (even the upsetting ones)
- Name them (I’m feeling sad, angry, hopeless)
- Express them in ways that are not harmful to yourself or others (journaling, telling God through prayer, talking to a safe person who will listen and empathize, etc.)
- Be gentle with yourself about what you’re feeling.
This process helps lower the intensity of our emotions and calms our systems down. When we do this, we will be more connected to ourselves and will move through these emotions more quickly and feel better. I’ll share more tips during the webinar.
I’m grateful to monARC Bionetworks for letting me be a guest on their upcoming webinar. They have a free mobile app tailored to the needs of people living with pulmonary fibrosis, called the PF Health app. It allows you to track your symptoms, share your data with healthcare providers, participate in research, and connect to curated resources. I use it, and it’s really helpful.
I’d love to hear from you!
What ways do you practice self-care? How have they helped? Can you join me on the webinar?
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.
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