We are thrilled to share our new spotlight interview in honor of Mental Health Awareness Month. Jodi is a CVID patient and therapist who has dedicated her work to helping others with PI manage their mental health while living with a chronic disease. Living with PI can be a challenging experience, and it's crucial to remember that mental health is just as important as physical health. We hope you're inspired by Jodi's words!

Please share your diagnosis and symptoms.
I was diagnosed in 2006 with Common Variable Immunodeficiency (CVID). My whole life, I had been experiencing chronic and persistent infections, mostly sinus, gastrointestinal, and skin. After being diagnosed, I began a plasma-based intervention known as Immunoglobulin therapy. 70% of all patients with PI will receive Immunoglobulin therapy either intravenously or subcutaneously. 

What made you want to be a therapist and treat patients? 
I was diagnosed with CVID when I was 31 years old and had already been a practicing therapist. I understood both personally and professionally the importance of managing your mental health while living with a rare and chronic health care condition.  Since 2007, I have had the opportunity to provide mental health treatment to patients and families living with PI through individual, group, and family therapy, as well as through research, publications, lectures series, and podcasts. 

Why is managing your mental health important to living with PI?
Managing your mental health can be just as important as managing your physical health. Living with a rare disease, which is often not identifiable to others, can feel very lonely. Likely at the time of diagnosis, most patients have never met someone who has a PI. This can feel not only isolating, but many patients and caregivers may feel misunderstood by friends and family, and often do not receive the support they need.  For many, the road to diagnosis may take many years, and patients and caregivers may not feel heard or faced with the challenges of managing our very complicated medical system. This can lead to frustration, grief, and loss, as well as anxiety and depression. In fact, studies have shown that patients living with primary immunodeficiency disease have higher rates of anxiety and depression than the rest of the population. 

That is why it is important to prioritize managing our mental health.  When we better manage our mental health, it makes it easier to manage our physical health. The following are some examples: 

  • Better flexibility to make decisions
  • Less impacted by everyday stressors, so it is easier to cope with mental health flares
  • Learn how to navigate interpersonal relationships to improve social connections and decrease isolation
  • Helps decrease medical burnout

Do you have any advice and tips about managing your mental health?
There are many different ways to manage your mental health:

  • Peer support groups. There are many peer support groups for patients living with PI. It can be very beneficial to connect with others who "get it." 
  • Mindfulness and meditation apps.
  • Maintaining social connections with friends and family members. Studies have shown that social connections improve both physical and mental health.
  • Maintaining some form of physical exercise and movement if possible.
  • Find time to do something joyful and utilize creative outlets. 
  • Professional mental health services:  Many patients may experience medical trauma, grief/loss, depression and anxiety and other mental health symptoms which may require professional mental health services. Professional mental health services can lead to a proper diagnosis and treatment, such as:
    • Individual, couples, and family therapy
    • Group therapy
    • Psychiatric assessments for psychotropic medication management

You can choose the mental health intervention that is right for you. Just make sure to make it a priority.