I am thrilled to share mental health guidance about living with rare disease for patients, caregivers and loved ones. Highlights: how the rare disease experience is different, medical trauma, mental health support for patients and caregivers, importance of community support and joy.

Looking for a partner? As Valentine’s Day approaches, learn which four qualities are essential in a mate, especially if you live with a rare health condition.

Consider the following suggestions as gentle guidance. I hope this advice will help you avoid potential pitfalls and steer you toward a healthy, happy partnership.

1. Seek someone who is reliable, nonjudgmental, giving and supportive

2. Seek a secure partner

3. Learn how and when to tell your health story

To learn more, please check out my article.

It’s that time of year again. We resolve to do more of this or less of that. Or maybe we decide to finish something big that’s always been there, just slightly out of our reach. But should this annual tradition really apply to those of us living with chronic health care conditions? If you’re managing a serious health condition, choose a resolution with care and be gentle with yourself.

Here are some ideas to consider on how to keep the good, and avoid any unnecessary stress when you make your New Year’s resolution.

1. Make it all about you.

2. Break it down.

3. Set relationship goals.

4. Set goals for your emotional health.

5. Use a team approach.

6. Be time-flexible

7. Make it fun and joyful.

Read more about this topic in my article in the CSL Behring Vita series Should You Make a New Year's Resolution?

CSL Behring asked leaders in patient advocacy to share examples of creativity and innovation in 2022. 14 leaders, including heads of patient organizations, patients and CSL staff participated and shared their ideas this year. One of those leaders was Jodi Taub, Licensed Clinical Social Worker and Primary Immunodeficiency Patient, who talked about her IDF Virtual Caregivers Support Group in the article:

“I have been leading a monthly patient caregiver's support group via Zoom. The group supports loved ones with primary immunodeficiencies. Having the opportunity to connect others in this rare, safe space is a great example of how technology can increase connection and improve mental health. I can't think of a better use for Zoom.”

Some other leaders talked about examining the role of race/ethnicity in the timely diagnosis of primary immunodeficiency, the flexibility for both patients and doctors to meet virtually, or keep the patient voice at the center of innovation.

“Seasonal affective disorder (SAD), a form of depression, can set in when days grow short, cold and dark.” Part of the reason that people feel symptoms of seasonal effective disorder is related to light. Having less time outside with light has a negative impact on people's mood. So, one of the things that I tell people to do which has been helpful is to make sure they get outside to get some natural light.

Thank you CSL Behring for interviewing me and including my tips in 3 Views: Coping With Seasonal Affective Disorder in the CSL Vita Series.

Some ideas on how to cope with seasonal depression through the winter months:
- Make sure you get outside to get some natural light
- Maintain exercise routines
- Make it a priority to connect with others. Maintaining relationships
is vital to mood stability

It was my pleasure to contribute to the SCID Compass Summit presentation. Key points: medical trauma, practical coping skills, and professional mental health support for caregivers with a focus on the importance of mental health and caregiving.

I am pleased to be part of a panel discussion, and presenting on the topic on "Beyond Coping: Resiliency While Rare," for the 2022 Living Rare, Living Stronger Patient and Family Forum, organized by the National Organization for Rare Disorders @nord_rare.

A rare disease diagnosis is often accompanied by an array of physiological and psychological challenges for both patients and caregivers. In this session, we will share firsthand experiences, strategies for coping, and skills to help people with rare conditions live meaningful and impactful lives.

The 2022 Living Rare, Living Stronger Patient and Family Forum will bring the rare disease community together in Cleveland, Ohio for a day of learning, networking, discussion, and the Rare Impact Awards. To learn more about virtual and in-person sessions, please visit: https://livingrare.org/

As more people make plans to gather in person for the holidays, how are you preparing? In this presentation for the Immune Deficiency Foundation, I share practical tips to manage stress and anxiety during the holiday season, especially if you are living with primary immunodeficiency or PI. Whether you're immunocompromised or immune competent, this content can be useful for anyone seeking to support their mental health.

During the Immune Deficiency Foundation Conference dedicated to rare disease within the Primary Immunodeficiency Forum, Jodi Taub discussed the following:

• Effective ways to cope with a new diagnosis

• Finding balance and practicing self care

• How to effectively communicate to others about your PI (Primary Immunodeficiency) journey

Listen to the latest episode of the Powered by Plasma Podcast, hosted by Immune Competence’s Colin Seal and Lisa Massey. We provide practical advice for immunocompromised patients and caregivers about finding gratitude and positivity as the Primary Immunodeficiency (PI) and the immunocompromised communities continue to be left behind by the COVID-19 pandemic.

Just when it looked like there was a light at the end of the tunnel with the COVID-19 pandemic, public officials started to roll back mask mandates and other protections. Now the Delta variant is causing positive cases to increase and prolonging our hope for normalcy.

I join Colin Seal and Lisa Massey on the Powered by Plasma Podcast to discuss the anxiety and stress those in the Primary Immunodeficiency (PI) community continue to live with during the pandemic. I also offer ways to help us deal with the ever-changing environment around us.

In Episode 1 of the Powered by Plasma podcast, we are joined by Jodi Taub, LCSW and practicing psychotherapist to talk about Primary Immunodeficiency, mental health, and how COVID-19 is amplifying the effects of both.

The Powered by Plasma podcast, hosted by Immune Competence founders Colin Seal and Lisa Massey, helps listeners navigate life with a chronic condition. The podcast features stories that make the journey “a little more fun and hopefully just a little easier.”

Check out the recording of my Instagram Live with naturopathic doctor Dr. Ivy Branin. Highlights include the following:

• How to find balance in life while managing chronic disease

• Navigating our current climate of wellness messaging

• How to communicate to others about our health care conditions

• How to cope with transitions

Many people are struggling with loss, change, and various stressors, lately more than ever. Once you become upset, similar thoughts and common narratives take over. Here are ways to cope.

Young people are more emotionally impacted by COVID-19 due to the pivotal point in life and development.

Covid-19 has brought a lot of unexpected change, and many of us have experienced grief and loss on a variety of different levels this year. So, how do we work through this year, as each of us are experiencing grief in different sorts of ways?

COVID-19 has brought with it many hardships; some anticipated, others unanticipated. One of them has been an increase in the struggle with substance use.

While 2020 has been a year of social isolation for everyone, many of us with fibromyalgia were already too familiar with isolation. Pain and fatigue often keeps us from enjoying social events and interfere with our relationships.

In this episode, Tami interviews Jodi Taub, a psychotherapist with multiple chronic illnesses of her own, about how we can protect our mental health and cope with social isolation and the loss of our holidays — whether it was brought on by the COVID-19 pandemic or simply fibromyalgia. 

In addition, Jodi provides practical advice on how to know if it’s just sadness vs. clinical depression and what steps to take to get the help you need. Jodi says, “We didn’t choose to have our diseases, but we can choose to make things easier.”

The holidays are coming up, and many of us have traditions to engage in. The holidays are also known to stir up feelings and memories. Pre-pandemic this was true, and now possibly even more so. Here are some ways to cope with the logistics and stress while still finding ways to connect.

In today’s episode, we dive into Jodi’s personal and professional journey as a very high-risk patient with Primary Immunodeficiency.

We talk about coping–both internally and externally–during this acutely difficult time in history, and we cover a number of related thoughts like fear, gratitude, judgment, life-risk, behavior change, trauma, and more.

Emotions are running high, everyone. But we can get through and we can do so together (even when we can’t physically be together).