A mental health option for IgG4-RD patients and caregivers
My foundation is partnering with experts to better serve our emotional needs
In the diagnostic phase of my journey, I was learning that I had multiple conditions back to back. While some of these fell under the IgG4-related disease (IgG4-RD) branch and some overlapped with my Sjögren’s disease, the rest have their own standing when it comes to my list of chronic conditions.
Acknowledging each of the new diagnoses, and the new sets of symptoms and limitations that come with them, was a challenging task. Having to unlearn my body, just to relearn it with these new limitations, took a mental toll on me that affected my well-being as a whole. I found myself in a vicious cycle of mental breakdowns, not knowing how to navigate my way out of the darkness.
The rejections, the gaslighting, the moves from one specialist to another, the pileup of numerous medications, and the new diagnoses were all overwhelming. I felt isolated and misunderstood. Our patient community is no stranger to these feelings, however, which is why we find our main comfort and compassion within our peer support groups.
Living with IgG4-RD and other diseases is so much more than just managing the physical symptoms; it’s also about navigating a complex web of emotional and psychological challenges. Along that path, I’ve been lucky and blessed to have had my mental health specialist with me for a long period of time. She knows my past, my present, my downfalls, and my growth. I was able to communicate my conditions and educate my therapist on my diseases so she could help me with the appropriate tools and coping mechanisms I needed.
Not everybody has this luxury! I’ve had countless conversations with members of our patient community regarding the mental health support they have. It soon became clear to me that we lack enough proper, accessible mental health support and resources. And once we get through the hurdles of finding a mental health specialist who’s covered by our insurance, there still remains a major need: that the specialist understand enough about our disease to help.
Providing my community with the support its members need for their journey is my utmost priority. That’s why I’m beyond excited to announce that my IgG4-RD Life foundation (I’m founder and president) has partnered with Mental Health for Rare to bring specialized mental health resources to our IgG4-RD patient and caregiver community.
A collaborative program
Recognizing that IgG4-RD affects the person as a whole and not just their physical health, our program, Mental Health for IgG4-RD, is committed to addressing the emotional and psychological well-being of patients and their caregivers. This program seeks to better understand our unique mental health needs and develop effective and targeted community-based support.
Through this community-driven survey and ongoing support efforts, we aim to shine a light on the mental health struggles of this community — it’s time to share those feelings! — and to collectively work to create accessible, compassionate resources that foster resilience, understanding, and hope. You are not alone in this. We are here for you, but also with you — as fellow patients!
Note: 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. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.Â
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.