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Thank you to those of you who’ve read more than your share of Lyme information this month! I hope you’ve gained valuable knowledge. Each year in May, I dedicate my efforts to raising awareness for this debilitating disease so others can avoid what my family has experienced.
Feeling Invisible?
Just because something is hard to see doesn’t mean it’s not there.
Have you ever felt invisible?
Has the medical community ignored you because you have a condition that’s difficult to see or diagnose?
Have you been told you have a mental illness because your medical condition is complex and doctors can’t determine what’s wrong?
If you have an invisible illness, you’ve answered yes to one or all of these questions.
An invisible illness is a medical condition that doesn’t have obvious external signs.
But ask one of the millions of patients what it means to have an invisible illness, and you’ll get different answers.
As a patient advocate, I meet and speak with patients worldwide who suffer from invisible illnesses.
The story is always the same.
This is what they’ve told me it feels like to have an invisible illness:
“I’ve been dismissed, ignored, and marginalized by dozens of doctors who told me my symptoms were all in my head.”
“My family and friends don’t believe I’m sick, so they don’t offer any support.”
“I’ve been questioned by loved ones, strangers, and doctors alike.”
“I’ve been blamed for things I can’t control even though the illness was explicitly communicated.”
“My character has been judged.”
“I’m asked why I can’t do normal things.”
“My diagnosis is considered a victim badge instead of an impairment.”
Many patients, who’ve been misdiagnosed with mental illnesses, have gone years without treatment, were told nothing could help them, lost hope, and stopped looking for help.
For children with an invisible illness, it’s even worse.
They’re told they’re making their symptoms up to get their parent's attention.
They’re told they’re depressed.
They’re told they’re exaggerating their symptoms.
Their parents are told they’re trying to avoid school or being bullied.
They start to believe they’re crazy and stop asking for help!
Children and adults, young and old, are suffering and dying from invisible illnesses. Illnesses such as Lyme disease, Long COVID, ME/CFS, Fibromyalgia, Lupus, and many autoimmune and neurological diseases.
My advocacy taught me that regardless of the illness, patients with invisible conditions face similar struggles, but not all patients are treated equally.
I lost my father to cancer, and I’ve had chronic Lyme disease and a rare autoimmune disease for half of my life. I speak from personal experience that there is a difference in patient populations, although there are many similarities.
The similarities:
May experience partial or total disability.
Endure debilitating symptoms for years.
They may be unable to work or care for themselves and their families.
Experience financial hardship.
Face an uncertain future.
They may die from their disease.
The differences:
Invisible illnesses are:
Difficult to recognize and diagnose.
Specialists are hard to find.
There is little research available to help determine treatment options.
Patients wait years for a diagnosis and are misdiagnosed many times along the way.
If diagnosed and treatment exists, patients often must pay out-of-pocket.
Treatment is often stopped due to financial hardship.
I’ve seen first-hand that patient outcomes vary based on the support received.
When patients are questioned and disbelieved by their families and friends, they lose hope and stop searching for help.
When a condition is not easily recognized, patients give up looking for answers while their health continues to deteriorate.
If medical treatment is not covered by insurance, most patients cannot afford out-of-pocket care. The chance of a full recovery is far less certain for these patients.
If a patient with lung cancer was told their symptoms were imagined or due to depression or anxiety and sent home, their disease would progress rapidly.
Their prognosis would be poor.
That’s what happens to patients with invisible illnesses every day worldwide.
A delay in diagnosis for those with Lyme leads to a chronic condition with no cure.
For some tick-borne infections like Rocky Mountain Spotted Fever, a delay of a week or two can be deadly.
Doctors are dismissed too.
When dozens of specialists dismissed my son, I asked the practitioner before leaving what they would do if they were in my shoes.
My question usually went unanswered, and I returned home wondering if more doctors were in my son’s shoes, maybe things would change.
But doctors are dismissed with invisible illnesses too.
Neil Spector, MD, a nationally recognized physician-scientist and oncologist at Duke Cancer Institute, was a brilliant physician dismissed by members of his profession for years.
Credited with leading two targeted cancer therapies to FDA approval, one for the treatment of pediatric T-cell acute lymphoblastic leukemia (nelarabine) and another for the treatment of HER2 overexpressing breast cancers (lapatinib), he too experienced what patients with invisible illnesses do.
He wrote about his experience in his book, Gone in a Heartbeat: A Physician’s Search for True Healing. The book chronicled his battle with Lyme disease, which went undiagnosed and untreated for years. The delay in diagnosis damaged his heart, and in 2009 he received a heart transplant.
Dr. Spector became a tireless advocate for increased Lyme Disease research and awareness.
I met Dr. Spector at one of his speaking engagements in 2018 after my son was diagnosed with Lyme disease. After his presentation, I thanked him for his tireless work. He asked why I was there, and I told him I needed to learn more about Lyme disease to help my son.
“I don’t think you can really take care of someone without finding out who he or she is.”
Soon after that first meeting, we connected on social media. I would learn this was not unusual. He found time to speak with patients and their families struggling to find answers, even when he was battling a disease himself.
In 2020, Dr. Spector contracted COVID, and his already weakened state led to his death at 63. It was a loss felt around the world.
As news of his passing reached the Lyme and oncology communities, tributes poured in via social media: “a legend,” “a hero,” “a shining light,” and “a huge loss.”
I was blessed to have known Dr. Spector. His words replay in my mind so often.
“Physicians are not there just to prescribe chemotherapy and order fancy tests, but to really get to know people.”
— Neil Spector, MD
He’s one example of a physician dismissed due to an invisible illness.
Steven Phillips, MD, a Yale-trained, world-renowned expert on zoonotic infections, is another. Well-published in peer-reviewed medical literature, he nearly died from a mysterious illness.
Dr. Phillips was an internationally renowned physician specializing in complex, chronic diseases when he became a patient.
He experienced first-hand the medical community’s ignorance about the pathogens that underlie a range of chronic conditions — from fibromyalgia, lupus, multiple sclerosis, chronic fatigue syndrome, and rheumatoid arthritis to depression, anxiety, and neurodegenerative disorders. Through his tireless investigation, he put together the clues of his illness and saved himself when his doctors couldn’t.
Dr. Phillips writes about his experience on his Substack, Zero Spin, and his book, Chronic: The Hidden Cause of the Autoimmune Epidemic and How to Get Healthy Again.
These are two well-known cases, but I know many more personally, such as:
A renowned neurologist whose young child developed mysterious symptoms but was dismissed by her colleagues. She found a specialist and trained with him to treat her son.
An internist and public health official whose child developed an invisible illness was forced to leave her position at a leading teaching hospital to get him the needed care. She started her own practice to help others facing the same circumstances.
If world-renowned physicians, scientists, and public health officials cannot get the attention of their colleagues and the care they need, how are ordinary patients supposed to?
Dr. Spector and Dr. Phillips used their experience to help others.
They went the extra mile, took the time to get to know their patients, and BELIEVED them.
We need more like them.
The world lost Dr. Spector far too soon, but his team of researchers at Duke is continuing the work he began.
Dr. Phillips continues to see patients and is spearheading a drug development effort to hopefully change how many rheumatologic and neurologic illnesses are treated.
Invisible illnesses are real, even when you can’t see them.
Patients with invisible illnesses deserve access to reliable, informed care.
They deserve to be seen and treated with respect and compassion.
Let’s stop treating patients as crazy and start helping them find answers and a path to regain their health and lives.
If you know someone with an invisible illness, consider how you may support them toward healing.
Why Soulful Sunday?
I began The Power of Change to explore the potential to transform your life in meaningful ways.
Being mindful of your life is the first step. It helps you focus on what’s important today and throughout the week.
Mindful Minute
Often, when we want to change something in our lives, we get frustrated with how slow the process may be. Remember, change takes time and a little patience too.
A Vision for You
Don’t let other people dictate your self-worth.
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