Understanding Mental Health: Personal Stories Part 2 – The Things They Can’t See

Four photos: One of a man and three of women. The photos are on a blue graphic with a logo that reads "IgG4ward!"

Our previous installment on the mental health aspects of living with IgG4-RD began to share the stories of four people diagnosed with this condition: Donna, Bert, Sabrina, and Lindsey. We continue their stories here. If you need a refresher on some of the details of the start of their stories, please click here: Understanding Mental Health Challenges in IgG4-RD: Personal Stories of Resilience, Reflection, and Mental Health | IgG4ward

Donna finds the most challenging aspect of dealing with the mental health effects of IgG4-RD to be the constant need to justify why she isn't feeling well.

“It is really hard for anyone to understand things they can’t see.”

The symptoms she experiences are often invisible to the outside world, making it difficult for others to empathize and understand. In addition, living with consistent discomfort significantly affects her mood. This ongoing struggle highlights the invisible nature of her condition and underscores the importance of raising awareness and understanding among others.

Bert mentions the uncertainty of how the disease will develop. He fears both the physical impact of his disease and the adverse effects of medications, regarding those two concerns together as his greatest mental health challenge. Nevertheless, Bert finds strength in focusing on the present and embracing each day as it comes. By channeling these uncertainties into proactive self-care, Bert has turned his fears into a driving force for resilience and optimism, demonstrating the transformative power of perspective and perseverance in the face of adversity.

Sabrina recalls the early years of her diagnosis as particularly challenging because she just didn’t know what was next. Her long journey to diagnosis, characterized by devastating misdiagnoses, gave her no confidence that doctors would ultimately help her find a way forward. Moreover, once she had been diagnosed, Sabrina found vanishingly little useful information about IgG4-RD: virtually nothing at all. She reports,

“In the early years, there was so much uncertainty. I manage much better now by comparison.”

Through determination and adaptability, Sabrina has learned to navigate her condition with confidence and has turned the initial lack of information into a motivation to educate not only herself, but others, as well. Hence, her motivation to contribute to the Caregivers’ Conversation of March, 2024 (Education and Resources | IgG4ward) and to participate actively in the Foundation’s Online Community. Rather than allowing her early struggles to defeat her, her story is one of empowerment and self-assurance, illustrating the power of resilience and working to get to a better day.

Lindsey describes the difficulty of differentiating the physical impact of IgG4-RD from mental health symptoms.

“It’s easy to see why IgG4-RD patients seeking diagnosis have their medical concerns brushed off and are told to try antidepressants instead of receiving testing that could lead to an earlier diagnosis.”

From a medical perspective, this underscores the wiliness of IgG4-RD: even a patient with widespread, multi-organ disease may have only symptoms that are remarkably non-specific and difficult to pin down. Depression or other issues pertaining to mood often get the blame – but these risks overlooking the underlying cause altogether and missing the opportunity to institute appropriate treatment. Recognizing the linkage between organ-based inflammation and mental health struggles is essential to ensure that patients receive the comprehensive care they need.

Finding Help

Help can come from many angles if one is open to receiving it. For her part, Donna finds comfort in connecting with others who have the disease. “It certainly helps when I read posts by others with this disease or talk with new friends I’ve connected with who suffer from this also.” Bert copes by enjoying simple things in life: flowers, birds, and good food. Sabrina finds solace in psychotherapy, which helps her keep perspective on living with IgG4-RD. Lindsey has grown to recognize that stress of many varieties tends to heighten her symptom levels. “When I am feeling good, I like to hike, travel, play guitar, spend time outdoors, do activities with friends and family. I work towards accomplishing bucket list hikes,” she shares, illustrating the diverse ways individuals navigate their challenges with the disease.

When stress, anxiety, or low mood arise, Donna, Bert, Sabrina, and Lindsey each employ different management strategies. Donna tends to keep to herself and snuggles with her dogs when not feeling her best physically and mentally. Bert finds peace in nature. Lindsey turns to her love of hiking and connecting with others when feeling down. Sabrina relies on prayer and music to stay hopeful and uplift her soul.

Sabrina often finds great joy in psychotherapy, as does Lindsey.

The variety of these strategies highlights the importance of “bespoke” solutions to the complexities of living with IgG4-RD.

What to Advise Others?

What advice do these four give to people recently diagnosed with IgG4-RD? Donna advises tuning in to your body’s signals and seeking professional help if needed.

“If you are noticing that the ability to cope with day-to-day things is being affected, get some professional help to assist in lessening the burden on yourself,” she suggests.

Bert suggests living life to the fullest without worrying, pointing out that it takes just as much energy (if not more) to worry as opposed to choosing to remain upbeat – so he chooses upbeat, even while acknowledging that this is more challenging on some days than others. Sabrina recommends finding an understanding physician, being proactive, and maintaining hope. Lindsey emphasizes the importance of feeling hope and being heard, as well as finding support in online communities and patient support groups. These diverse perspectives offer valuable guidance and encouragement for individuals navigating their own journeys with IgG4-RD.

The personal narratives shared by these courageous individuals shed light on the multifaceted mental health hurdles encountered by those living with IgG4-RD. The diverse solutions that all four have found - professional assistance, finding peace in nature, engaging in physical activities, and establishing personal boundaries – make it clear that all journeys are unique. Most encouragingly, perhaps, is the message that all journeys, difficult though they can be at times, have the potential to be uplifting, providing new perspectives on what it means to live well.

If you're looking for a supportive online space, we encourage you to join the IgG4ward! Online Community.

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  1. Inspiring to read the stories of the people living well and getting the upper hand on IgG4-RD – and nice to see the pictures of smiling faces. This is a beautifully-written piece.

  2. Thank you for pulling together this piece to highlight the bright spots!
    The Foundation is like a pot of gold at the end of a rainbow, only this isn’t a myth. 👍🏽😁