Ginger is rightfully exhausted. When I last spoke with her, Ginger told us about her experience living with various rare conditions: Huntington’s disease, chronic myeloid leukemia, and a rare acquired blood disorder called paroxysmal nocturnal hemoglobinuria. She’s had to push back against medical professionals who dismissed, ignored, or plain didn’t understand her symptoms. 

At the same time, as a longtime advocate for people living with rare medical conditions, Ginger knows how important it is to speak up. Which is why her more recent diagnosis has been so challenging for her. 

After weeks of coughing up blood and a new raspiness in her voice, a bronchoscopy showed “hemorrhaging into both of my small air sacs in my lungs,” Ginger tells me. “I was diagnosed with laryngeal cancer with metastasis to my vocal cords and some lymph nodes. I have gotten sicker and worse every day. I am barely getting through each day and now I have so much more to battle.”  

Ginger describes losing her voice as “the worst nightmare”. She says, “I can’t work, or anything that involves my voice. I am terrified of losing it permanently, as I’ll be having a partial laryngectomy.”

In her recent Rareatives interview, Ginger discusses the struggles of navigating a new diagnosis in the face of medical gaslighting, why she hopes to soon start Rare Warriors 4 Life, and what readers can do to support her (including donating to her GoFundMe!). 

What is Laryngeal Cancer?

Laryngeal cancer, also known as throat cancer, typically results from cancerous cells forming in the  larynx, or voice box. It makes up about one-third of head and neck cancers. As a relatively rare cancer, laryngeal cancer accounts for less than 1% of new cancer cases in the United States each year. Laryngeal cancer is about 4x more common in men than women—making Ginger’s case even more rare—and also commonly recurs. Anybody who has had laryngeal cancer in the past has a one-in-four chance of recurrence. 

Symptoms or manifestations of laryngeal cancer may include: 

• Persistent hoarseness or other vocal changes
• Ear pain
• A lump or swelling in the neck 
• Dysphagia (difficulty swallowing)
• A persistent sore throat 
• A high-pitched wheezing sound when breathing 
• Shortness of breath 

For Ginger, she explains that she’s most struggling with “breathing, coughing up blood, losing my voice, and being so tired I can’t get out of bed each day.” 

Early detection is vital in successfully treating laryngeal cancer, and is typically followed by surgery and radiation treatment or chemotherapy. It’s a hard road, and one Ginger knows all too well. She says, “I am beginning radiation therapy, then having a partial laryngectomy done and probably chemotherapy intravenous as well — yuck.” 

The surgery Ginger is having — a partial laryngectomy — involves removing part of the voice box, trying to remove as much cancer as possible while leaving the larynx mainly intact. The aim is to allow people to speak and breathe naturally afterwards, but patients’ voices are often changed by the procedure and require rehabilitation after surgery.

Medical Gaslighting: Unfortunately Common in Rare Disease

The use of her voice is critical for Ginger. Over the years, doctors have responded with dismissal or confusion to her complicated medical picture, forcing her to be her own best advocate. Ginger considers much of what she’s encountered to be medical gaslighting. 

With a sigh, she says, “I don’t feel like my doctors ever listen to me. They just brush off my symptoms, and that’s why I’m so sick now. Some of this could have been prevented.” 

Gaslighting, a term people often associate with personal relationships where one person manipulates another into doubting their own experience, is increasingly recognized as a problem in medical settings. According to a recent article from Harvard Health, healthcare professionals gaslighting patients by invalidating their concerns can lead to missed diagnoses, delayed treatment, and poor health outcomes. 

A 2024 study in Current Psychology also points to the psychological toll medical gaslighting takes on patients, who can experience medical trauma as a result. Medical trauma, a trauma that occurs from experiences in medical settings, shares many of the core features of PTSD, such as hyperarousal, re-experiencing, and avoidance. It’s also associated with an increased risk of mortality for health problems, along with behavioral risk factors such as non-adherence to medication. 

Medical gaslighting is psychologically damaging for those who experience it, but it is also physically dangerous, particularly in the case of cancer or other diseases where early detection is so important. When a doctor dismisses symptoms that could lead to a diagnosis, this can result in worse outcomes and more aggressive treatment than would otherwise be necessary. 

Unfortunately, in the case of rare diseases such as Ginger’s, medical gaslighting is especially common. Along with poor listening skills, doctors may miss or dismiss the symptoms of a rare disease because they’ve never seen it before. Rare disease symptoms can also be vague, unusual, or similar to those of more common and benign conditions, leading providers to take them less seriously.

The tendency to dismiss or downplay symptoms is just one of the signs of medical gaslighting. Patients should also be on the look out for providers who diagnose them without a thorough examination, tell them symptoms are “all in your head,” or refuse to address certain of the patients’ topics or concerns.

Ginger points out how much of this could be avoided if doctors took the time to listen to patients whose symptoms are hard to fit in a box. She has some advice for doctors, saying, “You could better help patients by actively listening and not being dismissive or disrespectful. If you took the time to listen and to treat the patients like human beings that would be a great start.”

More than that, she advocates for increased resources for the rare disease community. “I feel there are not nearly enough resources out there for patients, especially rare diseases patients,” she says. “During the diagnostic and treatment process, there should be more medical, physical, and financial resources available to people with rare diseases.”

Not Giving Up, and the Need for Support

But the challenges Ginger faces with laryngeal cancer doesn’t mean she’s going to stop speaking up for herself and others in her situation — as she says, “giving up is not in my vocabulary.” Ginger underscores that patients of all illnesses “deserve as many opportunities as a healthy person, maybe even more.”

She’s determined to launch Rare Warriors 4 Life, an online company that puts patients at the heart of medical market research. After connecting with numerous patients and researchers throughout her career and personal medical journey, she saw the need for a company that can look at healthcare more holistically: one that treats individuals within the system as humans, not misread files to be passed from doctor to doctor.

“There is such a need for a company like this that is actually run by a patient who actually understands the entire big picture,” she says, “but I need a small business loan or investment to make it a reality. I would love to see this dream come to fruition. It’s most definitely my greatest desire.” 

Ginger is currently looking for a small business loan or investment. If you’d like to help Ginger realize her dream, please reach out and I would love to make the introduction.

In the meantime, Ginger faces challenges in simply getting through the day. Her struggles with her new cancer symptoms are made harder by the fact that the top floor apartment she shares with her husband and son is poorly accessible and has rats in it. Ginger recently started a GoFundMe to improve her living situation, and to ease the burden of her medical expenses.

The sheer weight of these struggles has forced Ginger to reckon with the limitations having multiple rare diseases have put on her life. “It’s hard to realize I’m not the same person nor am I invincible,” Ginger reflects. Managing one diagnosis is difficult, much less the entire hand ginger has been played. She’s been holding onto her voice through poetry. In her poem “Losing Myself,” she writes :

Locked in boxed in losing my mind,

The crazier I feel the more I get left behind,

Feel trapped inside my own mind and broken body,

I definitely don’t feel like a hottie.

I feel blocked and locked into specific spaces

And of my former self there are no traces. 

Losing the battle I’ve fought so hard,

I feel like there for me left is no regard.

I’ve been there for many and tried to help

But now in my battle I feel alone 

And no one comes to my rescue to no avail. 

I feel restless and scared,

But I don’t feel like people ever really cared.

Ghosted and toasted but here I remain

While I battle my illnesses making me go insane.

Living with daily challenges and pain,

You find that others pull further away

Yet they want you to hear their every team of life problems,

Petty as they may be they are just not here for me 

In my true hour in need.

Many proclaim their loyalty and love

Yet they fly away like a dove 

Because you’ve become too much of a bug or nuisance.

In the end it’s better that way 

Because you no longer have any loyalties nor oppressiveness

And can be your own person, no matter how hard it may be.

You can do what’s best for you

Without your sanity becoming undue.

As I sit in the dark watching TV shows over and over,

I realize that my old self, my old life, is over 

For all intents and purposes. 

I bury my pain and my sadness every day, bury it oh so deep

But I see my life changing in a bleep of a moment.

The old me, the healthy me, the creative and energetic me is gone,

Lost in the abyss never to return.

So I leave you with those, love who you are, appreciate what you have,

Nurture yourself and your loved ones

Because once things are different they will never return

And you will be left alone feeling the burn. 

Ginger’s words echo the truths of being chronically ill: feeling alone and tired, and wishing for the life you once had. But she is still pushing onward, saying, “ I believe that we have to stay strong and keep moving forward, no matter how bad things get.” 

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Ginger is currently dealing with unsafe living conditions alongside the treatment costs associated with her new diagnosis, and is looking to change her housing to better support her health conditions. If you’d like to help her in finding a new apartment, please donate via her GoFundMe page.