Recognizing and managing depression in life with a rare disease

“You’ll Never Walk Alone” was written by Richard Rodgers and Oscar Hammerstein II for the 1945 musical “Carousel.” Many others have performed the song over the years, and it’s even become the anthem for Liverpool Football Club in England. Most recently, I’ve enjoyed the version by Marcus Mumford. Take a minute to read some of the lyrics he used:

“When you walk through a storm/ Hold your head up high/ And don’t be afraid of the dark/ … Walk on, walk on/ With hope in your heart/ And you’ll never walk alone.”

When I was diagnosed with idiopathic pulmonary fibrosis (IPF) in January 2017, I quickly learned it was a rare, chronic, progressive disease with no cure. As you might imagine, that prognosis can be depressing.

Patients and caregivers may feel overwhelmed by the volume of appointments, medications, and the reality of the disease. Recognizing the signs of depression can be helpful for any rare disease community.

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According to the Anxiety and Depression Association of America, symptoms of depression may include:

• “Persistent sad, anxious or ’empty’ mood”
• “Feelings of hopelessness, pessimism”
• “Feelings of guilt, worthlessness, helplessness”
• “Loss of interest or pleasure in hobbies and activities, including sex”
• “Decreased energy, fatigue, feeling ‘slowed down'”
• “Difficulty concentrating, remembering, making decisions”
• “Insomnia, early-morning awakening, or oversleeping”
• “Low appetite and weight loss or overeating and weight gain”
• “Thoughts of death or suicide, suicide attempts”
• “Restlessness, irritability”
• “Persistent physical symptoms that do not respond to treatment, such as headaches, digestive disorders and pain for which no other cause can be diagnosed.”

It’s important for me to share an inclusive list of possible signs. Some of the lesser-known symptoms may be overlooked by the person experiencing depression and by the casual observer. Were there any on the list that surprised you?

Another form of depression, which I’ve often seen in the IPF community following a lung transplant, is referred to as survivor’s guilt. When I received my bilateral lung transplant in July 2021, I immediately realized that receiving the lungs that saved my life meant another person had died.

I’d sought out information on transplant and organ donation before I was ever listed, so I’d already come to terms with this reality. I understood that the decision to donate one’s organs was a selfless gift.

In my Feb. 14, 2023, column, I interviewed two donor families. Both were glad their loved one’s passing had provided the gift of life to someone. It created a legacy that lives on.

Managing mental health issues

Dealing with depression associated with a rare disease diagnosis or survivor’s guilt can be overwhelming. Big feelings don’t just go away. Knowing the signs can help you and your loved ones recognize when you might need help.

May is Mental Health Awareness Month, an opportunity to raise awareness of the challenges associated with mental health issues and combat harmful stigmas.

If you’re struggling, help is available to you. If you visit a facility that’s part of the Pulmonary Fibrosis Foundation (PFF) Care Center Network, a social worker will be assigned to help you find the proper resources.

Support groups are a great way to find others on a similar rare disease journey, but keep in mind that the groups aren’t one-size-fits-all. You might have to try several to find one where you feel comfortable and that best meets your needs. The PFF provides a support group locator where you can search for in-person and virtual support groups.

So what does all that have to do with a song from a 1945 musical? If the pulmonary fibrosis community had an anthem, it could be “You’ll Never Walk Alone.” I’m always amazed at how willing members of this community are to share their experiences. Doing so has been therapeutic for me. It’s how I 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.