My legs, core, face, and neck had swollen to three times their normal size. But I was gaslit by five doctors. In 2020, I was at the peak of my physical health as a sponsored athlete in adventure sports. Over four weeks, I challenged myself with intense activities, including whitewater kayaking on the Arkansas River and the Cache la Poudre River in Colorado, followed by summiting Medicine Bow Peak and the Upper SE Face of Baxter's Pinnacle in Wyoming. Mere days later, I pushed my limits further by attempting to climb the Grand Tetons. However, by January 2024, my physical condition had deteriorated dramatically; I now required the support of a cane to walk.
Despite following a strict whole-food diet, maintaining regular exercise, and continuing my adventures several times a week, I inexplicably gained 40 pounds. The swelling and weight gain were confusing, as they seemed to defy my otherwise healthy lifestyle and dedication to fitness. This unexpected health decline left me searching for answers, trying to understand why my body had betrayed me in such a baffling way.
Worse, two general practitioners and three specialists didn’t believe my story about unexplained weight gain.
They gaslit me.
They all said I’m just putting on a little weight and talked about body positivity. One specialist asked me if I thought I might be living with the wrong gender. In total, five doctors tried to refer me to mental health rather than take my symptoms seriously. When I finally found a country doctor who did believe me and ran some tests, it turned out I had dangerously high inflammation markers like my C-reactive protein (CRP) levels.
The dismissal of my symptoms by medical professionals led to a sense of betrayal and mistrust in healthcare providers, mainly when dealing with complex or less understood conditions.
The issue of medical gaslighting lymphedema sufferers
“Medical Gaslighting“ is when healthcare providers dismiss or downplay a patient’s symptoms, attributing them to psychological issues or lifestyle choices without adequate investigation. This can be particularly harmful when it comes to conditions that don’t fit into common diagnostic patterns or when symptoms are unclear.
Encountering skepticism from multiple doctors, especially when they suggested my symptoms might be related to psychological or identity issues without basis, is a profound form of gaslighting. This not only delays proper diagnosis but can also exacerbate (make worse) the health issue due to prolonged exposure to untreated symptoms.
The role of inflammation in lymphedema
C-reactive protein (CRP) is a marker of inflammation in the body. Elevated levels, like what I experienced, can indicate a wide range of problems, from infections to chronic diseases like autoimmune disorders or even certain cancers. High inflammation can lead to symptoms like swelling, weight gain, and general fatigue, explaining my physical changes.
Lessons learned: Talking with doctors about lymphedema
Patient Advocacy: My ordeal highlights the importance of patient advocacy. Sometimes, you must persist against medical skepticism to find a diagnosis. It’s crucial to seek out different medical opinions, especially when initial interactions don’t lead to satisfactory outcomes. Sometimes, a doctor outside the mainstream urban or suburban medical centers, like my country doctor, might have a different perspective or approach.
Not all conditions fit neatly into well-known categories. Chronic inflammation conditions might not be immediately obvious or well-understood by all practitioners.
Moving forward from your lymphedema diagnosis experience
After this experience of gaslighting by my doctors, I have this advice for you. It’s important to find healthcare providers who listen and validate your experience. Building a relationship with a doctor who considers your symptoms with seriousness can be vital for ongoing care.
Consider documenting your symptoms and preparing for appointments with notes or questions to ensure your concerns are addressed.
My lymphedema diagnosis story underscores the need for empathy, thorough investigation, and a holistic approach in medicine, where each patient’s story is taken seriously, regardless of how unusual their symptoms might seem.
Understanding Lymphedema: What is Edema?
Edema is just a fancy word for swelling. It happens when too much fluid gets stuck under your skin. You might see this kind of swelling if you’ve hurt yourself, like when you bump your knee or are sick. It can also happen if you sit too long, like on a really long car trip, or if you’re pregnant. As people get older, their legs might swell because the tiny doors (valves) in their leg veins start to leak.
What is Lymphedema?
Lymphedema is different from Lipedema. Lipedema is caused by abnormal fat cell distribution, while lymphedema is caused by a blockage in the lymphatic system.
Lymphedema is when swelling sticks around for a long time and doesn't go away. It's like your body's plumbing system for cleaning up fluid isn't working right. This fluid, called lymph, is supposed to move around your body through special tubes and stops called nodes or lymph nodes. But if these tubes (lymph nodes) or stops get blocked or damaged, the fluid can't move properly and pools up, making your arms, legs, or even your face, neck, or other parts swell up.
When this happens, your body might start making more of a stuff called collagen, which is like a building material for your skin, and fat, making the swollen parts feel heavy and look bigger. You might also feel very tired. I suffered from chronic fatigue and had to stop driving for fear of falling asleep at the wheel. When you have lymphedema, the skin might get dry, thick, or crack, which can make it easier for you to get skin infections.
How lymphedema swelling is different
Unlike regular swelling, lymphedema doesn’t go down much, even if you (elevate) lift your leg or arm up high or take medicine that makes you pee a lot (diuretics). You might need special help from doctors and lymphedema therapists to manage your symptoms. If you or someone you know has swelling that doesn’t disappear, it’s good to check with a doctor.
Lymphedema, a condition characterized by the accumulation of lymphatic fluid causing swelling in parts of the body, continues to be an underrecognized yet impactful health issue.
Here, we delve into its commonness or prevalence, diagnosis, treatment, and the lives it touches, including those of some well-known personalities.
The prevalence and demographics of lymphedema
In the United States, it’s estimated that up to 10 million individuals suffer from lymphedema, surpassing the commonness of conditions like Multiple Sclerosis, Muscular Dystrophy, ALS, Parkinson’s disease, and AIDS combined.
Globally, the numbers are stark, with up to 250 million people affected, highlighting lymphedema as a significant public health concern.
“Up to 250 million people worldwide have lymphedema (LE) with an estimated 10 million living with lymphedema (LE) in the United States, more than HIV, Parkinson’s, multiple sclerosis, muscular dystrophy, and ALS combined.”
The Lymphatic Education and Research Network—The Incidence and Prevalence of Lymphedema
Who’s at higher risk for having lymphedema?
- Cancer Survivors: Particularly those who have undergone treatments involving lymph node removal or radiation, such as breast cancer survivors, where the risk can be as high as 30%.
- Veterans: Due to injuries, infections, or exposure to environmental hazards like burn pits.
- Individuals diagnosed with obesity: Obesity can impair lymphatic function, increasing your sensitivity to lymphedema.
Is Lymphedema on the Rise?
The overall incidence of individuals diagnosed with lymphedema might be increasing due to better recognition and reporting. Among the young, no definitive evidence suggests an increase, but awareness might lead to more diagnoses.
How lymphedema is diagnosed and treated
Diagnosis: Lymphedema diagnosis involves a physical examination where signs like Stemmer’s (inability to pinch a fold of skin at the base of the second toe) indicate lymphedema. More sophisticated methods include:
- Lymphoscintigraphy: Imaging to evaluate lymphatic function.
- MRI or CT scans: To identify obstructions or tissue changes.
Symptoms of lymphedema
- Swelling in arms, legs, or other parts of the body.
- Skin changes include thickening, hyperkeratosis, or a sensation of heaviness, cramping, and fatigue.
- Tightness, discomfort, or pain in affected areas.
Lymphedema treatment and management
Lymphedema cure vs. management
Doctors say there is no cure for lymphedema, but it can be managed to improve quality of life. In a follow-up article, Glutathione: Understanding the Body's Master Antioxidant, I’ll tell you how I avoided taking prednisone, permanently eliminated the swelling caused by lymphedema, lowered my inflammation markers by 20 points in less than 90 days, and lost 30 pounds in 90 days using natural methods.
Standard of care practices for lymphedema treatment
- Complete Decongestive Therapy (CDT): A combination of manual lymphatic drainage, compression therapy, exercise, and skin care.
- Compression Therapy: Using garments or bandages to manage swelling.
Tactile Medical’s compression therapy solution
The second most important treatment I used in treating lymphedema is Tactile Medical’s Flexitouch Plus system. The Flexitouch Plus system is an at-home pneumatic (operated by air under pressure) compression device designed to help reduce swelling and improve lymphatic flow. It mimics the natural wave-like motion of the lymphatic system, aiding in the reduction of lymphedema symptoms.
Natural remedies for treating lymphedema
- Exercise: Promotes lymphatic drainage and muscle pump action.
- Massage: Manual techniques can help move fluid.
- Compression garments and Pneumatic compression like the Flexitouch Plus system
- Herbal Remedies: Some advocate for plants like horse chestnut or butcher’s broom, though evidence is anecdotal and not universally supported by clinical research.
However, in part two of this topic, I’ll tell you which herbs worked for me. So, subscribe to my weekly newsletter and follow me on social media to be the first to know when this article is published.
Glutathione and lymphedema
No substantial evidence suggests that glutathione alone treats lymphedema. Its role in detoxification could theoretically support overall health, but targeted studies for lymphedema are lacking. However, I leveled up my lymphedema treatment by adding glutathione therapy to my strategy. I’ll tell you more in part two.
Lymphedema can affect anyone regardless of age, lifestyle, and socioeconomic access to treatment.
Famous Individuals with lymphedema
Lymphedema doesn’t discriminate. Some public figures have shared their experiences:
- Kathryn Joosten, the actress known for “Desperate Housewives,” who passed away from lung cancer in 2012, suffered from lymphedema, which she discussed openly to raise awareness.
- Diana Krall, the jazz pianist and singer, is also noted to suffer from this condition due to complications from breast cancer treatment.
Connection between lymphedema and chronic inflammation:
Lymphedema can cause ongoing inflammation due to the accumulation of proteins and other substances in the tissue, which can trigger an immune response. This cycle can perpetuate chronic inflammation in affected areas.
Connection Between Lymphedema and Chronic Fatigue:
Lymphedema can contribute to chronic fatigue in several ways. The persistent swelling and discomfort can lead to reduced physical activity, which can cause deconditioning and fatigue.
Additionally, the inflammation associated with lymphedema might contribute to systemic effects like increased cytokine levels — small proteins important in cell signaling, which can lead to fatigue.
Chronic conditions often overlap with fatigue syndromes, where the physical burden and psychological stress of managing a chronic illness like lymphedema can compound feelings of exhaustion.
In conclusion, my journey through the complexities of lymphedema and the subsequent experiences of medical gaslighting have been both challenging and enlightening. I have learned that resilience and self-advocacy are essential in navigating the healthcare system. Every individual’s story is unique, and it's vital for medical professionals to listen with empathy and an open mind.
“While my body faced turmoil and transformation, I discovered the strength within myself to seek the truth and demand the care I deserved. This experience has ignited a passion to advocate for my own health and empower others facing similar health challenges to speak up and seek support.”
Antoinette Lee, MBA — The Wellness Warrior
Remember, your voice matters. Each step, no matter how small, brings us closer to better understanding ourselves and our bodies. If you find yourself in a position where your concerns are dismissed, don’t lose hope — seek out those who will take your symptoms seriously and trust your instincts. Together, we can create a community of awareness and change, ensuring no one feels alone in their health journey. Embrace your strength and continue to fight for your well-being; you deserve it.
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