Why I'm Thankful to Celebrities Who Share Their Experience with Chronic Illness
Christopher Meloni is raising awareness of Lyme Disease
Hello everyone, and a special welcome to everyone who joined this week!
Before I jump into today’s edition, I want to provide a brief recap and an update about The Power of Change.
As many know, I’m a Lyme patient and advocate, having battled Chronic Lyme Disease for more than half my life. May is Lyme Awareness Month, and I offer resources that are not widely available during the month. If you’re looking for the latest guide I published a few weeks ago, you’ll find it here.
The Power of Change
I launched this publication eighteen months ago to address a growing need within the chronic illness patient community.
For several years, while juggling my health condition and caregiving responsibilities for a family member with Lyme Disease, I helped other patients and their families who were struggling to find answers and a path forward.
The requests for help were constant. Soon, I didn’t have the time necessary and needed another way to help.
As a former communications executive and writer, I began documenting what I learned through years of research and my work with medical professionals and the many coaches, mentors, and mental health professionals with whom I’ve worked. Then COVID hit, and the world of chronic illness expanded quickly. But it wasn’t just illness that was the topic of conversation when someone reached out. We also talked about the loss of a loved one or the trauma of unexpected life events.
Mothers, fathers, grandparents, sons and daughters. Young and old.
I have had conversations with people from all over the world and from all walks of life. Despite their differences, they all have one thing in common.
They were searching for ways to heal from loss.
They needed tools to create a path forward and recapture joy in their life.
When hard times hit, most people don’t talk about it. They don’t share their vulnerability. Instead, they often bury their feelings and hope they’ll improve over time.
But that’s generally not how healing works.
A journey of healing, whether from illness, loss, or trauma, requires attention and support. Opening up is easier when you have shared experiences, and talking with those who have walked a similar path provides a safe space to do so.
Whether it’s a family member, a dear friend, or someone you’ve never met who’s been in your shoes, it helps to know someone’s there and they understand.
My experience helping others reinforced what I had learned years before.
How you respond to adversity determines how quickly you’re able to rebuild.
The Power of Change is the vehicle through which I share the experiences and tools that helped me and many others. It is crafted with much love and hard work.
Each week, I cover topics from medical gaslighting to the epidemic of loneliness.
Now, it’s time to expand the publication. In the coming months, I’ll invite authors and writers from around Substack to contribute to the discussion. But first, I’d like to know what topics you’re most interested in. Please comment below and tell me what you want more or less of, or reach out directly here.
Ways to help
To support my continued efforts, I’m also asking for your help reaching more people who need hope and healing.
How can you do that?
By liking and commenting on an article, you help the publication get discovered by other readers. You’ll also make my day by hitting the ❤️, leaving a comment, or restacking the post if using the Substack app. As a writer, it always helps to know our work resonates with readers.
Share the work with others. If you enjoyed a post, others will, too. Please email it to friends or share it on the social media networks you utilize. This is especially true when I offer information about the dangers of Lyme disease and how best to protect yourself.
If you’ve been a free subscriber and enjoy reading each week, please consider becoming a paid subscriber. Through June 2, the annual subscription price has been discounted to just $39.00 as part of Lyme Awareness Month. For each new paid subscription, 50% will be donated to the Global Lyme Alliance.
If you’d like to support independent writers like me, there’s another way to help. It’s similar to becoming a “Patron of the Arts,” but instead of a $1,000 donation, you become a Founding Member of The Power of Change for $150. Founding Members receive a private session with me to discuss a topic you’d like to know more about. If you’re local, we’ll meet over coffee. If not, we’ll meet virtually.
Last, if you haven’t picked up a copy of my book, consider asking your local library or bookstore if they’d stock it! If you’d like to order it, drop me a note, and I’ll send you an autographed copy.
Thank you all for your ongoing support! Now, to this week’s edition.
Why I’m Grateful to Celebrities Who Share Their Experience with Chronic Illnesses
Christopher Meloni is Raising Awareness of Lyme Disease
If you’re one of the millions of fans of the NBC show Law & Order: SVU or Law & Order: Organized Crime, you know Detective Elliot Stabler and the Emmy-nominated actor who portrays him, Christopher Meloni. I’ve enjoyed the show for years, but Meloni plays another role that recently caught my attention.
In 2023, Meloni, an Ambassador with the Global Lyme Alliance, filmed a Public Service Announcement that ran in Times Square. In it, he spoke about his family’s experience with Lyme disease. He has been an active advocate and recently met with members of Congress to lobby for increased Lyme funding.
When I saw the PSA in Times Square, it renewed my hope for a cure. It meant the Lyme community welcomed another well-known face with a platform to reach many people and advocate for change.
In 2015, musician Avril Lavigne revealed she had been battling Lyme Disease. Her song Head Above Water is about her fight. She, too, worked with the GLA and hosted a live-stream concert in 2020 to raise funds for the GLA. She also started her foundation to help raise awareness.
Other celebrities who have battled Lyme Disease and shared their experience include:
Actors Mark Ruffalo, Alec Baldwin, and Ben Stiller; Musicians Shania Twain and Justin Beiber; Comedian Amy Schumer and Yolanda and Bella Hadid.
By speaking out about their experiences, these well-known celebrities have broadened the awareness of a devastating disease often misunderstood and misdiagnosed. Their willingness to step forward means a great deal to the community they support.
Not only are they helping to raise much-needed research funds, but they also help normalize life with a chronic illness for millions of patients.
Lyme Disease Does Not Discriminate
Most chronic illness patients are surrounded by healthy family members and friends. It’s common for them to feel as if they don’t belong because their lives are so different from those around them. Some children and teenagers will never attend a prom, play a high school sport, or graduate with their friends.
And while most patients can’t relate to starring in an award-winning television show or winning a Grammy, they can relate to the shared suffering of Lyme disease.
Lyme disease does not discriminate. Everyone affected is searching for hope and healing.
Celebrities who have been affected remind us we’re not alone. They remind us everyone is just trying to reach the other side of healing.
Over the years, I’ve spoken with hundreds of patients who don’t have the notoriety of a celebrity, but they’re searching for the same answers:
What treatments should I try?
Will I get better?
How long will it take?
While I write about chronic illness across all of my social media accounts as well as on Substack and Medium, I’m one voice with a small audience of a few thousand. On the other hand, Christopher Meloni has more than 1 million Instagram followers and many more fans of his work. When he speaks, people listen.
Public figures can move the needle because of who they are or their accomplishments.
And in the case of Lyme disease, every effort is welcomed by patients who have been dismissed and ignored for decades.
I was one of those patients. For years, I was misdiagnosed or dismissed and felt utterly alone in my fight to be well. However, the more I connected with other patients, the more I realized how many people shared my journey. Knowing you’re not alone can be the difference between surviving and thriving.
I chose to thrive.
At my worst, I put on my headphones and blasted the title song from Lavigne’s album. It reminded me I was not alone. I repeated the song until I was ready to face the day. Her music helped me keep my head above water many times.
Every voice matters
Most healthy people don’t understand that every voice matters in this fight. You may not know someone with Lyme disease now, but with 500,000 new cases every year in the US alone, rest assured you’ll know someone in your life who’s been affected. And if they experience what most patients do, they’ll desperately search for information, answers, and help.
When that happens, I hope you remember reading about Lyme disease here. You may not remember what I said, but I hope you know if you reach out, I’ll be ready to help.
Just last night, I received a call from an old friend. We hadn’t spoken in a few years, but when she texted me, I knew it must have been important. She was reaching out to ask if I would talk with a friend of hers who has a 12-year-old son with Lyme disease. They live in New England and cannot find help. The medical community has dismissed the family, and they’re frustrated and scared.
I receive calls like that every week.
A parent or friend reaches out because someone they care about needs help. They remember my story and hope I can help.
That’s why it’s essential for all patients to be heard. While most are uncomfortable sharing their story, speaking about their experience raises the collective voice and makes it much harder to ignore.
Celebrities who come forward amplify that voice and do so from a much larger platform. They also offer patients hope.
Hope that more funding will be directed to research initiatives.
Hope that treatments for all stages of Lyme disease will be developed.
Hope that insurers will stop denying treatment, leaving patients to fend for themselves financially.
Hope that a cure will be found.
For these reasons, I’m grateful to everyone who comes forward and speaks about their journey, whether they’re a celebrity or not.
Until next week, be mindful and stay safe.
Tracy xo
If you enjoyed this post, please click the ❤️ at the end so more people can discover it on Substack. If it resonates with you, drop me a note and let me know how.🙏🏻
You are a gem Tracy, your Power of Change principles apply to all of life’s challenges & whammies. All the best - always :-) m
Tracy - your writing is powerful, and you are helping loads of people. Thank you!