Resources for Mental Health Are an Important Part of Any Care Plan

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by Samuel Kirton |

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

Examples might include anticipating a medical procedure, awaiting test results or word from a transplant committee, watching the doors of the operating room for the surgeon who will perform a transplant, or feeling 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 in a grocery store and elementary school in the U.S., news headlines create an additional weight to carry.

Resources for you

As members of a rare disease community, we have access to a number of resources to assist us in dealing with the life events we encounter on our journey. Pulmonary Fibrosis Foundation Care Center Network sites typically take a multidisciplinary approach that includes having social workers as members of the care teams. They understand the challenges you may be facing. More importantly, a social worker can assist in identifying available mental health resources for you to 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 participate in, is unstructured, with no agenda, speakers, or presentations.

Imagine a coffee shop environment where friends meet to catch up. The meetings are virtual, and the concept was conceived to provide a break from the isolation that many PF patients have experienced since the beginning of the pandemic. It’s also an opportunity for pulmonary fibrosis patients to ask each other questions.

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

I also completed 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 training on self-care for the mental health first aid provider. To take care of others, we must take care of ourselves first.

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

It’s OK not to be OK

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

Pulmonary fibrosis patients, caregivers, family members, and friends all must deal with a chronic, progressive disease for which there is no cure. There are stressors in each of those roles. How each person copes with those stressors will be different. It’s OK to need some level of support to manage the impact of pulmonary fibrosis. That support can be in the form of any of the resources listed above.

There is not a single, universal solution. Just as each of us is unique, the right solution also will be unique.


May is Mental Health Awareness Month. Increasing awareness about mental health is necessary. It’s critical that you recognize the need for help and leverage the resources 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 an either-or choice.

It’s not easy. I know I haven’t always gotten it right. Give yourself grace on this journey so that you can make every breath count.

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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.


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