Recognizing and managing depression in life with a rare disease

“Youll Never Walk Alone” was written by Richard Rodgers and Oscar Hammerstein II for the 1945 musical “Carousel.” The song has been covered by many others over the years, and has even become the anthem of Liverpool Football Club in England. More recently, I’ve been enjoying Marcus Mumford’s version. Take a minute to read some of the lyrics he used:

“When you walk through a storm/ Hold your head high/ And don’t be afraid of the dark/… Walk, walk/ 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 that it was a rare, chronic and progressive disease with no cure. As you can imagine, this prognosis can be depressing.

Patients and caregivers can 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.

According to the Anxiety and Depression Association of America, symptoms of depression can 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, waking up in the morning 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 is important to me to share an inclusive list of possible signs. Some of the lesser known symptoms can be overlooked by the person suffering from depression and the casual observer. Are there any on the list that surprised you?

Another form of depression, which I have often seen in the IPF community after a lung transplant, is known as survivor guilt. When I received my bilateral lung transplant in July 2021, I immediately realized that receiving the lungs that saved my life meant that someone else had died.

I had looked up information about transplants and organ donation before I was on the list, so I had already accepted this reality. I understood that the decision to donate the organs was a selfless gift.

In my February 14, 2023 column, I interviewed two donor families. Both were happy that the death of their loved one had provided the gift of life to someone. He created a legacy that endures.

Management of mental health problems

Coping with depression associated with a rare disease diagnosis or survivor’s guilt can be overwhelming. Great feelings don’t just go away. Knowing the signs can help you and your loved ones recognize when you 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. If you visit a facility that is part of the Pulmonary Fibrosis Foundation (PFF) Network of Care Centers, a social worker will be assigned to help you find the right resources.

Support groups are a great way to find others on a similar rare disease journey, but keep in mind that groups are not one-size-fits-all. You may need to try several to find one that you feel comfortable with and that best suits your needs. The PFF offers a support group locator where you can search for in-person and virtual support groups.

So what does all this have to do with a song from a 1945 musical? If the pulmonary fibrosis community had an anthem, it might be “You’ll Never Walk Alone.” I am always amazed at the willingness of members of this community to share their experiences. Doing this has been therapeutic for me. This is how I make every breath count.

Note: Pulmonary Fibrosis News is strictly a disease news and information website. It does not provide medical advice, diagnosis or treatment. This content is not intended as a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your doctor or other qualified health care provider with any questions you have about a medical condition. Never disregard or delay seeking professional medical advice because of something you read on this website. The views expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to stimulate discussion about issues related to pulmonary fibrosis.