Understanding Mental Health Challenges in IgG4-RD: Personal Stories of Resilience, Reflection, and Mental Health

A photo of a man in a race car with his hands in the air and a quote reading, "Rather than succumb to fear around the disease, I approach my diagnosis with curiosity and wonder, seeking to understand its intricacies and its impact on my life." – Bert - Person Living with IgG4-RD

We have explored in previous posts the significance of mental health awareness within the IgG4-RD community and benefitted from a social worker’s insights about the potential impact of disease on one’s mental well-being. We now shift our focus to the personal narratives of four people living with IgG4-RD.

Donna, a Boston nurse, is approaching the first anniversary of her IgG4-RD diagnosis. Almost a year to the date of her surgery to remove one kidney and ureter, both of which had been strangled by IgG4-related retroperitoneal fibrosis, Donna suffered an ankle fracture – likely a complication of her months of treatment with steroids. This experience hit her hard, reminding her that even after diagnosis, sometimes it seems that “there really is no downtime from this disease.”

She describes a “suffocating feeling of defeat” every day, and an overriding pessimism about what is next.

Though she describes her pre-IgG4-RD self as an eternal optimist, the mental health challenges associated with her IgG4-RD diagnosis have been every bit as impactful as the loss of her kidney and the complications of her treatment. The mental and physical hurdles as well as the treatment complications are bound up tightly in the full experience of her disease.

Bert, a resident of the UK, has been living with IgG4-RD since his diagnosis in July of 2021. Bert has taken a distinctive approach to the challenge of living with IgG4RD, embracing the presence of the disease in his life.

He acknowledges that it occupies his thoughts multiple times a day, but rather than succumbing to fear, he approaches it with curiosity and wonder, seeking to understand its intricacies and its impact on his life.

Perhaps by permitting him to achieve some distance from his disease, Bert believes that the vantage point of an observer that he has adopted – at least some of the time - has been an effective coping mechanism.

Sabrina, diagnosed in October 2013, finds herself reflecting on her mortality sometimes. While not experiencing depression, she frequently contemplates the potential impact of inflammation and scarring from the disease on her lifespan. This introspection shapes her IgG4-RD, altering her perspective on life through underscoring its uncertainties.

At the same time, the experience of coming to terms with her IgG4-RD diagnosis and living with its ups and downs have helped her develop a keener appreciation for being alive.

She no longer takes anything for granted.

Lindsey, diagnosed in April 2022, has had a similar experience.

“When I was diagnosed with IgG4-RD and learned I would survive longer than anticipated, I noticed increased mental clarity and life satisfaction that lingered for quite some time,” Lindsey shares.

During a period when she was awaiting surgery for what was suspected to be a metastatic tumor – but ultimately was diagnosed as a mass caused by IgG4-RD - she reflected heavily on what truly mattered in life. This period of reflection brought increased mental clarity and life satisfaction to Lindsey. By turning her fears and uncertainties into a catalyst for personal growth, Lindsey transformed a challenging diagnosis into an opportunity for deeper appreciation and joy in life.

We are indebted to Donna, Bert, Sabrina, and Lindsey for their insights on their disease experiences and for the openness of their sharing. We will continue our discussion with them in our next installment.

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Responses

  1. @Donna (hoping I tagged the correct Donna!), I fractured my ankle as well from the years of prednisone!!! Cuboid fracture. They said it was “very rare” to fracture that part of my ankle. I was like, of course it is haha.

    1. Ahh yes….steroids…the gift that keeps on giving, lol! As if the IgG4-RD wasn’t enough to deal with on its own, we have to contend with the collateral damage as well!