If you have PF and are experiencing mental health concerns, you are not alone. In fact, patients with PF are at an increased risk for developing mental health conditions such as depression and anxiety. Living with pulmonary fibrosis can be challenging to all aspects of your quality of life – physically, psychologically, emotionally, and spiritually.

For instance: certain medications designed to treat physical symptoms can have side effects impacting mood. This can affect relationships with those around you, thereby leading to social isolation and further exacerbating mental health challenges. But this is just one of the many reasons that people with PF might struggle. To learn more about the factors influencing mental health and PF, click here. If you’re ready to take the first steps in (1) recognizing the signs of someone struggling with mental health and (2) talking about it or reaching out for help, read on below.

Recognizing Signs of Someone Struggling with Mental Health 

Mental illness is a common concern in the United States, and individuals with chronic illness like PF may be more susceptible to developing mental health issues. According to the National Alliance on Mental Illness, 1 in 5 adults in the U.S. experience mental illness each year. It’s important to remember that mental health struggles are not a sign of weakness. There is no shame in needing support with managing symptoms of mental health (just like it’s okay to seek support with managing physical symptoms!). 

Depression and anxiety are two of the most frequent mental health concerns for individuals with PF. However, everyone experiences mental health struggles differently. Some signs to look out for may include:

  • difficulty sleeping, 
  • changes in mood or behavior, 
  • loss of interest in activities, 
  • increased isolation or withdrawal, 
  • changes in appetite or weight, and 
  • decreased energy. 

These symptoms may be related to the stress of waiting for test results, being newly diagnosed, experiencing a flare of symptoms, or managing side effects of medication. Or, these symptoms can be a sign of a mental health issue or another underlying health concern. No matter the cause or concern, if you notice these signs in yourself (or a loved one), it’s wise to talk about mental health and reach out for help. 

Talking about Mental Health – and Reaching Out for Help

It can be difficult to talk about PF, especially since it is not a well-known condition, and people rarely want to be defined by their diagnosis. However, having open and honest conversations with loved ones, caregivers, and your doctor or PF specialists can help create a support system and alleviate some of the stress and anxiety.

Here are some tips for talking to your loved ones about PF and the ways it impacts mental health:

  1. Be honest and direct: It’s important to be open and honest about the ways PF is affecting your mental health. Explain the symptoms you’re experiencing and how they’re impacting your mood and behavior. Let your loved ones know that you want to talk about it and that you value their support.
  2. Communicate with people in your social realm: If you’re struggling with negative feelings, let your friends know. Provide them with tips for helping you cope and be open to their suggestions. Communicating with friends can help prevent misunderstandings and ensure that you’re receiving the support you need.

3. Share information: Provide your loved ones with information about PF and how it affects mental health. This can help them understand what you’re going through and give them insight into how they can help.

4. Give specific examples: Share specific examples of how PF has impacted your mental health and relationships. This can help your loved ones understand what you’re going through on a day-to-day basis.

5. Educate younger relatives: If you have younger relatives, it’s important to talk to them about PF in a way that is age-appropriate. Use simple language and provide them with information that they can understand. Let them know that coughing from PF is not contagious, for example, and that it’s okay to ask questions.

6. Ask for help: Consider asking for help with day-to-day tasks (such as assisting with scheduling medical appointments, getting to/from appointments, or accompanying you at the appointments and advocating on your behalf). And try not to hesitate when a friend, relative, or caregiver offers to help. Encourage your loved one to seek support if they need it too!

7. Set boundaries: Let your loved ones know what you need from them in terms of support. Be clear about what you’re comfortable discussing and what you’d rather keep private. Setting boundaries can help prevent misunderstandings and ensure that you’re receiving the support you need.

8. Talk to a healthcare professional: If you’re struggling with the side effects of medication, talk to your healthcare provider. They may be able to adjust your medication, make a referral to a mental health professional, or provide additional support to help manage your symptoms.

9. Seek community support: It can be helpful to join a support group or connect with others who are going through similar experiences. This can provide a sense of community and prevent you from feeling isolated, misunderstood, etc. 

10. Advocate for yourself: If you’re struggling with your mental health, it’s important to advocate for yourself. Again, let your doctor know what you’re experiencing and ask for additional support if needed.

Talking about PF and mental health can be difficult, but it’s a critical step in managing your condition and creating a support system. By taking control of your treatment plan, you can nurture your mental health as you fight PF. You are not alone!

Stay In Touch

PF NOW! hosts virtual support groups on Teams multiple times each month. Not only will you strengthen your network of connections but you’ll learn firsthand how those with PF best look after themselves. PF NOW! also has a Facebook group whose active community shares their PF journey and their tips with others. New to online support groups? Download our free step-by-step guide for online advocacy here.

Never disregard professional medical advice or delay in seeking it because of any information received from us.

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