Unstoppable: How Megan Ryan has redefined success while navigating society with an Immunodeficiency Disease
Not all people living with physical limitations outwardly show their illness or limitation. The world is filled with people living with chronic pain or others living potentially debilitating fatigue. And while they also live with the illness associated with these symptoms they also live with potential anxiety, guilt, depression, exhaustion, frustration and sometimes isolation.
As a part of our “Unstoppable” series, I had the pleasure of interviewing Megan Ryan.
Megan Ryan is a native Texan; lover of flowers, plants and gardening; always planning for an upcoming travel adventure. For more than 20 years, she has lived with Common Variable Immune Deficiency, one of more than 400 identified primary immunodeficiency diseases. Megan is treated with weekly infusions of immune globulin which is manufactured from human plasma. Without this weekly treatment she’d likely live with persistent and potentially fatal infections.
Thank you so much for doing this with us! It is really an honor. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
Let me take you back more than 20 years ago. I was a recent college graduate beginning my career and I had just married my husband. In the summer of 2001 I was diagnosed with a primary immunodeficiency disease called Common Variable Immune Deficiency — yes, that’s a mouthful and no, there’s nothing common about it. I was thankful for a rather quick diagnosis and that a treatment option was available.
I was originally seen by a primary care physician as a part of a routine physical to determine why I was having muscle pain in my lower legs. Laboratory results came back inconclusive so she did more, and more, testing. At that time, I did not know her practice was focused on serving people living with HIV+ and AIDS, so she knew quite a bit about the immune system. Upon receipt of more conclusive tests, she indicated I was out of her scope of practice and I am thankful that she referred me to a clinical immunologist who quickly took my case on and confirmed my diagnosis with further testing. I was lucky because this is a rare disease and many patients can go years without a formal diagnosis.
Do you feel comfortable sharing with us the story surrounding how you became disabled or became ill? What mental shift did you make to not let that “stop you”?
Upon diagnosis, my immunologist specifically advised me to focus on the positive — that a treatment option was available and he assured me that the treatment was going to be successful. I heeded his advice and focused on the positive from the beginning. Of course, there have been some low points and unexpected stops on my journey, but I’ve learned the power of resilience and that I can bounce back from that low point.
Can you tell our readers about the accomplishments you have been able to make despite your disability or illness?
I spent almost 22 years working in a demanding professional services environment where I contributed to the strategy and operational leadership of a large business unit. During many Friday-afternoon meetings I would infuse my immunoglobulin product with few people knowing. In the workplace, I was never hesitant to share my diagnosis or journey as a person living with a rare and chronic disease.
Today I apply that professional experience serving on three non-profits boards and a few other advisory committees. I now spend more time focused on advocacy in our patient community working with newly diagnosed patients, caregivers, as well as healthcare providers.
I’ve taken my weekly treatments on the road to many of the 50 states, more than 20 countries and four continents so far. Just last week I infused my immunoglobulin product in Death Valley National Park following a day of hiking and exploring.
What advice would you give to other people who have disabilities or limitations?
One’s medical diagnosis(es) should not define who you are as a person. I am not Megan with Common Variable Immune Deficiency — I am far more than that. I am a community volunteer, non-profit leader, experienced financial operations professional, talented communicator, patient advocate, passionate friend, wife and daughter. I love to dig in the dirt and grow beautiful plants and flowers and I’m always planning my next travel adventure.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
More than twenty years after my diagnosis I remain full of life and optimistic about the future and I owe a lot of that to the legion of plasma donors who provide the plasma necessary to manufacture my therapy. Without this treatment I would likely live with persistent and potentially fatal infections. I encourage everyone to find out if they are eligible to donate plasma and if so, consider doing so.
How have you used your success to bring goodness to the world?
Through my work with the Immune Deficiency Foundation I help educate patients and health care providers about primary immunodeficiency diseases and the importance of plasma donation to make therapies for patients. I currently serve as a peer-support coach and support group leader working to meet patients where they are on their journey. I also speak at plasma donation centers where I thank donors and put a face to who is helped by their plasma donations, making that human-to-human connection. I also like to help employees at plasma donation centers find deeper meaning in the work they do by sharing my story.
I’ve also been involved in federal advocacy efforts to support my patient community. I was the sole U.S. contributor to the International Patient Organisation for Primary Immunodeficiencies (IPOPI) Learning Expedition (LEX) to identify, analyze and provide recommendations on issues brought about by the COVID-19 pandemic for patients with primary immunodeficiency disease. This report was published in January 2021 to build awareness of the physical, social and emotional well-being needs of patients in our community.
I’ve also spoken at healthcare provider and patient conferences to shed light on the patient journey. I’ve been interviewed on podcasts and worked to advocate for increased plasma donations.
Can you share “5 things I wish people understood or knew about people with physical limitations” and why.
- Not all people living with physical limitations outwardly show their illness or limitation. The world is filled with people living with chronic pain or others living potentially debilitating fatigue. And while they also live with the illness associated with these symptoms they also live with potential anxiety, guilt, depression, exhaustion, frustration and sometimes isolation.
- I am challenged each time a person comments to me: “but you don’t look sick.” That phrase can invalidate a person living with an invisible illness. Some days it takes significant effort to generate an outward appearance to project to the world that I have it all together.
- Every day I might have a smile on my face and appear that is nothing wrong; sometimes that is a mask that I use when I put everything aside and just opt to be strong. I try not to share the stories of gut-wrenching responses to antibiotic treatment or how my abdomen, on occasion, unattractively bears four ping pong size balls of fluid following an infusion.
- Persons living with a rare or chronic disease may spend several hours a week managing administrative processes related to their care, including insurance matters, prescription refills and coordinating among doctors’ offices. These tasks can be very circular and exhausting!
- Your family member, acquaintance, friend or colleague with physical limitations or an invisible illness wants to be invited to events or social gatherings just as much as anyone else. But if they have to cancel at the last minute due to illness or fatigue, keep inviting them. They really want to be there with you but sometimes just cannot muster the physical or emotional energy. With the increased use of technology, consider using Zoom or FaceTime to connect virtually.
Can you please give us your favorite “Life Lesson Quote”?
“Most of the world’s work is done by people who don’t feel very well.” — Winston Churchill
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the U.S. whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
I’d love to have breakfast or lunch with Judith Faulkner, the CEO and founder of Epic Systems, the healthcare software company that has revolutionized electronic medical records. We’d share a meal and talk about how patient-centered care has been impacted, both positively and negatively using EMRs, and how that can continue to be enhanced.
Disclosure: Megan Ryan receives compensation for her work with CSL Plasma. She is not a healthcare professional. For health care questions, please contact your physician.
Unstoppable: How Megan Ryan has redefined success while navigating society with an Immunodeficiency… was originally published in Authority Magazine on Medium, where people are continuing the conversation by highlighting and responding to this story.