An Immune Deficiency Foundation survey of 4,500 patients showed that people who have primary immune deficiency disease – or care for someone with PI – are more than twice as likely to be at risk for depression.
Twenty-three percent of adults who have PI were found to be at risk for depression, while among the general population in the United States, nine percent are at risk.
The news isn’t surprising. People who have one of 350 rare, immunodeficiency diseases often struggle for years to get a diagnosis. Then, once diagnosed, they must manage a complex disease that leaves them more vulnerable to serious, even fatal, infections.
But when Paul Gianfriddo addressed PI patients at a recent national meeting, he didn’t bring a message of doom and gloom. Quite the opposite. Gianfriddo, who leads the nonprofit group Mental Health America, offered this advice:
- Get screened for depression and other behavioral health problems.
- Tap into available resources.
- Lean on your family and find peers who can show you the way.
It’s common to have both a physical health condition and a mental health condition, he said. The stress of a serious illness naturally might bring on depression and anxiety, Gianfriddo said. The problem is the healthcare system isn’t set up to handle this reality. You can’t expect the doctor who cares for your physical health to also be an expert on emotional health, he told members of IDF community at its national meeting in the Washington, D.C. area. Gianfriddo urged the audience to self-advocate by taking a depression screening, a series of questions that can help determine if someone is at risk for depression.
Mental Health American offers a depression screening – and a variety of others – on its website. But don’t stop there, Gianfriddo said. Take the results to your doctor and talk them through.
“Say, now let’s work together to see what this means,” said Gianfriddo.
Just as many patients must educate their doctors about rare diseases, sometimes they also must educate doctors about the need to integrate care for physical problems with care for emotional health, he said.
Gianfriddo has deep experience as a caregiver. His adult son struggles with schizophrenia and he lost a daughter to breast cancer. Early in his career, he served as a Connecticut state legislator assigned to health policy matters. But Gianfriddo found that even with his position and experience with healthcare, he still struggled to find the educational and mental health resources his son needed.
And later when his daughter fell ill, she received a groundswell of support – a marked difference from what tends to happen when someone is dealing with a behavioral health problem. We must get better at treating “the whole person,” Gianfriddo said.
“The reason we’re here is because we all understand in this room that there is no difference – no difference in the need for comfort in the present, no difference in the need for hope in the future. There’s no difference at all in the desires, wishes, dreams and ambitions, the interests we all have in living happy, productive lives.”