Managing mental health with IgG4-related disease

Last updated June 2, 2025, by Elena Schmidt
Fact-checked by Patrícia Silva, PhD

Living with IgG4-related disease (IgG4-RD) often means navigating symptoms and uncertainty that can exact a toll, not just physically, but mentally as well.

Struggles with anxiety, low mood, or feeling disconnected aren’t unusual, and they don’t mean something is wrong with you. They’re a natural response to a difficult diagnosis. The good news is that there is support.

From practical coping tools to relying on mental health professionals and peer communities, there are ways to manage IgG4-RD and your mental health effectively.

The emotional impact of living with IgG4-RD

The emotional impact of living with a chronic illness often occurs before a diagnosis, especially with a rare disease like IgG4-RD.

You may have faced years of fragmented care, been passed between specialists, and endured misdiagnoses like cancer or other immune diseases.

Then, once treatment begins, you may still experience flare-ups that bring pain, fatigue, and other uncomfortable symptoms, as well as side effects from IgG4-RD treatments.

In fact, according to a study, about 90% of people with IgG4-RD report at least one disease symptom, and most of them experience emotional distress. Unfortunately, this distress often lingers even when the disease is clinically inactive. Around half of IgG4-RD patients still wrestle with fear about what might come next regarding their disease progression.

Recognizing signs of depression and anxiety

Uncertainty combined with IgG4-RD’s physical symptoms and treatment side effects can spiral into depression or anxiety without daily coping strategies, emotional support, and awareness.

IgG4-RD and depression

Depression does not announce itself all at once. It often builds quietly through experiences like:

finding it hard to care about milestones or activities that once brought you joy
feeling heavy, irritable, or numb for days at a time
struggling to make simple decisions or start everyday tasks
thinking more often about loss, regret, or hopelessness
having frequent thoughts of death or suicidal thoughts.

Anxiety and IgG4-RD

Anxiety tends to weave itself into the spaces in between. Even when IgG4-RD is under control, you might notice:

racing thoughts about worst-case scenarios
a constant sense that something bad is about to happen
trouble sleeping or relaxing, even when you are exhausted
feeling on edge in situations that once felt normal
rapid breathing, sweating, or trembling.

Depression and anxiety are both normal responses to the uncertainty of living with this rare condition. Recognizing these signs is the first step toward getting the tools to steady yourself and move forward.

Daily coping strategies

Having a range of daily habits may help you cope with the emotional impacts of IgG4-RD. What matters most is finding something you can return to each day, something that makes you feel grounded and brings you peace.

Some approaches you might find helpful include:

practicing box breathing to slow spiraling thoughts and steady your heartbeat
repeating short affirmations like “I can meet this moment” when fear creeps in
turning to gentle distractions like puzzles, easy reading, or light television
stepping outside for a few minutes, even if only to breathe fresh air or feel sunlight
walking your dog or moving your body in small, manageable ways
listening to music that lifts your mood or helps you reflect
taking warm showers or baths to relieve physical and emotional tension
practicing gratitude by naming one or two things that provide joy or stability
engaging in meditation and creative activities like writing, drawing, and photography
asking for help from family, a support community, or faith-based friends.

Coping does not mean erasing pain and loss. It means giving yourself tools to navigate IgG4-RD one act at a time. But when those small steps aren’t enough, connecting with a therapist can be a powerful way to reset.

Counseling and therapy

A counselor or therapist trained in chronic illness can help you work through the complex feelings that may come with IgG4-RD. Together, you can sort through the fear of flare-ups, the grief of lost abilities, and the anger or sadness that may come with missed diagnoses or wrong diagnoses, like cancer.

Therapy also helps untangle the quieter burdens, such as medical trauma or the guilt of needing help when you once cared for others.

In particular, a therapist for chronic illness can help you:

differentiate between fatigue driven by IgG4-RD symptoms and fatigue rooted in anxiety or depression
navigate the emotional toll of visible and invisible changes to your body
rebuild confidence in your ability to manage uncertainty about disease progression
learn how to communicate your needs to your loved ones
create strategies for advocating for your mental health within your medical care team.

When searching for an IgG4-RD therapist, consider asking your doctor for a referral. They may have specific therapists they work with who have experience treating people with chronic illnesses.

Alternatively, you can do some research online for mental health providers who specialize in chronic disease, medical trauma, and rare conditions.

Finding a support group

Talking to IGg4-RD peers who understand what you’re going through can also be profoundly healing. IgG4-RD support groups remind you that you are not alone and can offer advice based on what they’ve learned throughout treatment.

In these spaces, you can talk openly about:

the experience of being told you had cancer, only to find out later it was IgG4-RD
the lifestyle shifts that can come with changes to a career, hobbies, or travel plans due to illness
the lingering fear about new organ involvement or irreversible damage
the emotional roller coaster of steroid treatment, relapse, and the uncertainty of long-term outcomes
coping strategies and other IgG4-RD resources
treatments that have been effective or not.

For online support, you can check various social media forums, as well as platforms like the IgG4ward Community, where people with the condition and their caregivers can share experiences, attend educational events, and feel a sense of belonging.

For in-person help, many communities offer support groups where you can meet in person with others living with various chronic illnesses.

What to do in a mental health emergency

Sometimes, the emotional weight of living with IgG4-RD can feel heavier than expected. If you ever find yourself having thoughts of self-harm or feeling so overwhelmed that staying safe feels difficult, it’s important to seek help right away. These moments deserve immediate support because what you’re feeling matters, and help is available. You can:

call or text the 988 Suicide & Crisis Lifeline by dialing 988 at any time, or chat with someone on the website at 988lifeline.org if making a phone call or texting is too overwhelming.
Connect with the Crisis Text Line — text “HOME” to 741741 to connect with a trained crisis counselor.

These services are free, confidential, and available 24 hours a day, 7 days a week. Many communities also offer local mental health crisis lines, providing support closer to home.

Reaching out for help during a mental health crisis, or any time you’re struggling, is not a sign of weakness. It is a sign that you’re taking your well-being seriously. You don’t have to manage the emotional toll of IgG4-RD on your own. Whether it’s a crisis line, a loved one, or a therapist, support is available when you need it.

IgG4-RD 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.