Mental health resources are an important part of any FP care plan

Carrying the weight of the world on your shoulders can be exhausting. Those of us affected by a rare disease – whether as patient, caregiver, loved one or friend – understand that anxiety can be triggered by almost any activity.

This may include, for example, anticipating a medical intervention, waiting for the results of a test or the opinion of a transplant committee, watching the doors of the operating room for the surgeon who will carry out a transplant or feel the isolation caused by the COVID-19 pandemic.

Not all triggers are related to our disease. With tragic events like the invasion of Ukraine and mass shootings at a grocery store and elementary school in the United States, headlines create additional weight to bear.

Resources for you

As members of a rare disease communitywe have access to a number of resources to help us cope with the life events we encounter on our journey. Pulmonary Fibrosis Foundation Network of Care Centers the sites generally adopt a multidisciplinary approach which includes the presence of social workers among the members of the care teams. They understand the challenges you might face. More importantly, a social worker can help you identify available mental health resources that you can access.

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Support groups can be a tool for you to interact with others who share similar experiences. Not all support groups are structured meetings. Coffee Among Friends, a support group I attend, is unstructured with no agenda, speakers or presentations.

Imagine a cafe environment where friends meet to hang out. The meetings are virtual and the concept was designed to break the isolation that many PF patients have experienced since the start of the pandemic. It is also an opportunity for patients with pulmonary fibrosis to ask questions.

You can find in-person and virtual support groups by visiting the Pulmonary Fibrosis Foundation website.

I also took a mental health first aid course offered by the Rappahannock Area Community Services Board. The course is designed to provide “first aid” to people facing a mental health challenge or crisis. The unexpected benefit for me was personal care training for the mental health first aid provider. To take care of others, you must first take care of yourself.

The course is offered in 20 countries, including the United States. To find a location near you, visit Mental Health First Aid website.

It’s OK not to be OK

There’s nothing wrong with not being OK. Asking for help is not a sign of weakness, but rather of strength, as you recognize an emotional health issue that you need help to resolve or to move on.

Pulmonary fibrosis patients, caregivers, family members and friends all have to deal with a chronic, progressive disease for which there is no cure. There are stressors in each of these roles. How each person copes with these stressors will be different. There is nothing wrong with needing some level of support to manage the impact of pulmonary fibrosis. This support can take the form of any of the resources listed above.

There is no single, universal solution. Just as each of us is unique, the right solution will also be unique.


May is Mental Health Awareness Month. Increased mental health awareness is needed. It is essential that you recognize the need for help and take advantage of the resources that are right for you.

Dealing with a rare disease is hard enough. Managing your emotional health is as important as your physical health. It’s not a choice.

It is not easy. I know I haven’t always understood correctly. Give yourself grace on this journey so you can make every breath count.

To note: Pulmonary Fibrosis News is strictly a disease news and information site. It does not provide medical advice, diagnostic, or treatment. This content is not intended to be a substitute for professional medical advice, diagnostic, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of anything you read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues relating to pulmonary fibrosis.

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