Good Question: Why Do I Feel “Off” After Getting Diagnosed with IgG4-RD?
Good Question:
"I am 54 and I have never dealt with anxiety or depression before – but since getting diagnosed with IgG4-RD, I just don’t feel like myself. I thought having answers would help, so why am I feeling so off?"
– David, living with IgG4-RD
Answered by Linda Toussaint, MSW, LICSW,
Licensed Independent Clinical Social Worker
Receiving a Diagnosis Can Be Emotional
Thank you, David, for your Good Question, the timing of which coincided perfectly with Mental Health Awareness month. Many people wonder why they feel emotionally “off” even after finally receiving an IgG4-RD diagnosis. In this Good Question, a clinical social worker offers guidance on why feeling off after an IgG4-RD diagnosis is more common than you might think.
When “Survival Mode” Ends, Emotions Surface
For months – or even years – you may have been in “survival mode”, focused on appointments, tests, finding the right doctors and the many uncertainties that come with the journey to diagnosis, all of which is very stressful.
Once the diagnosis arrives, it creates space for your nervous system to finally react. That is when emotions such as anxiety, sadness, or even fear can surface, even if you haven’t previously been confronted with those feelings. It is also not unusual to grieve: grieve the life you had before the illness, or the sense of security you once felt about your body and its functioning. Some people might even feel betrayed by their body. All of these feelings are understandable given the complications of an experience such as this. Some of the emotions may even feel conflicting: on one hand you feel relief but on the other you sense a deep sadness or fear.
This does not mean that there is something wrong with you. It is part of your processing and adjustment to a major life shift – and that takes time, patience and support. Even those with a long history of emotional resilience can be impacted by the stress and weight of living with a rare disease.
Ways to Cope and Find Support
his journey does not have to be navigated alone. Speaking with a therapist or licensed mental health professional can be a powerful step that helps you make sense of what you are feeling. Seeking out support groups for those navigating rare disease, taking time to journal your feelings and emotions, mindfulness practices such as taking a moment to notice your own breath or other sensations as well as connecting with others who understand your experience can all be helpful and healing. It is important to know that there is a large connection between the mind and body. Doing activities that gently involve both can aid in calming the nervous system. Some examples are taking a slow walk or sitting with mindful awareness in nature, deep breathing exercises, restorative yoga, and massages to name a few. More than anything, meeting yourself with compassion, patience, and kindness is so necessary.
Your emotional health is just as important as your physical health and in fact. Feeling “off” does not mean you are not strong – it means you are human.
Related Resources
If David’s question resonated with you, you’re not alone. Below are additional resources from the IgG4ward! Foundation that may help you explore emotional support, connect with others, and feel more informed on your journey.
Thank you to our sponsor for supporting patient education through our Good Question Series:
