Multiple Autoimmune Diseases: Meet Tessa

The Beginning: When Everything Changed

Tessa Muldoon’s journey with multiple autoimmune diseases and other chronic illnesses is marked by years of medical dismissals, financial hardship, and an eventual diagnosis of dermatomyositis, Graves’ disease, Hashimoto’s, dysautonomia, and more. Her journey began in 2011 when she was under immense stress and developed an unusual symptom—itchy ears that no treatment could relieve. Over time, her condition worsened. In 2013, after getting a tattoo, her skin erupted in painful red patches, leading her to suspect something was seriously wrong.

In 2015, when she became pregnant, some of her symptoms temporarily subsided, only to return with brutal intensity after childbirth. The pain, sensitivity, and inflammation on her skin made even wearing clothes unbearable. Doctors dismissed her symptoms as anxiety or eczema. It wasn’t until 2016, after demanding further testing due to her family’s lupus history, that she was finally diagnosed with dermatomyositis, a rare autoimmune disease that affects both the skin and muscles.

The Struggle for Proper Care

Getting a diagnosis was only the beginning of Tessa’s battle. She faced challenges finding doctors who truly understood her disease. Many medical professionals had never seen a case as severe as hers. Treatments were a constant experiment; several FDA-approved autoimmune medications failed to provide lasting relief. She even participated in a clinical trial in 2019, which showed promise until an unexpected seizure disqualified her.

Desperately, Tessa searched for a specialist, but financial constraints made long-distance travel impossible. She was placed on a waitlist at Johns Hopkins and, after waiting three years, was finally granted an appointment.

A Turning Point: IVIG Infusions

In the meantime, Tessa’s symptoms drastically improved after it was recommended that she start Intravenous Immunoglobulin (IVIG) treatment. IVIG infusions contain antibodies from the blood of healthy donors to help prevent the body from attacking itself and to reduce inflammation. For the first time in years, she could walk without overwhelming fatigue and move without unbearable pain. However, IVIG treatments are prohibitively expensive—$95,000 per month, not including nursing and equipment costs. The financial burden of chronic illness became yet another battle to fight.

A Devastating Revelation

Finally, in 2022, Tessa made it to Johns Hopkins, expecting answers. Instead, what she heard shook her to her core: her condition was cancer-associated. This meant she had likely fought cancer at some point without treatment, and dermatomyositis was the result of her body’s immune response. The realization that she had unknowingly survived cancer while being dismissed for years was overwhelming and emotional, but it also pushed her to fight harder for a treatment that could sustain or improve her quality of life.

As if dermatomyositis weren’t enough, Tessa also battles multiple autoimmune diseases, including Graves’ disease, Hashimoto’s, dysautonomia, as well as POTS (postural orthostatic tachycardia syndrome), congestive heart failure, and pelvic congestion syndrome. Each condition presents its own challenges, making daily life unpredictable and exhausting.

The Financial and Emotional Toll of Chronic Illness

Living with chronic illness is financially devastating. Disability benefits are not enough to survive on, and insurance often refuses to cover life-saving treatments. In 2023 alone, Tessa spent over $19,000 out of pocket on medical expenses. The lack of financial support for disabled individuals makes independent living nearly impossible.

Beyond finances, chronic illness takes a toll on personal relationships. Many people in Tessa’s life struggled to understand the severity of her condition. At times, she felt isolated, fearing she would lose relationships with friends and family due to the demands of her illness. The grief of losing independence and the future she once envisioned weighed heavily on her.

Finding Strength and Purpose

Despite everything, Tessa remains resilient. She has learned to advocate fiercely for herself and others. She educates people about autoimmune diseases through her social media platforms and has even written a book—”The Spoonie Ninja: Finding Strength in the Shadows”—to help others navigate life with chronic illness.

She has become a trusted resource for others struggling with similar battles, offering advice on navigating insurance, advocating for medical care, and coping with disability. Her social media posts have helped thousands of people find the answers they desperately needed.

A Message to Others with Chronic Illness

For those newly diagnosed or struggling with their health, Tessa’s advice is clear:

• Grieve the life you lost. It’s okay to mourn who you were before illness changed everything.
• You don’t have to hide your pain. Chronic illness is isolating, but you are not alone.
• Fire your doctors if necessary. If a doctor dismisses your symptoms, find someone who will listen.
• Seek support. Whether through online communities, advocacy groups, or therapy, support makes a difference.
• Your voice matters. No one knows your body better than you do—never stop fighting for the care you deserve.

The Fight for Better Healthcare

Tessa’s experience has highlighted the deep flaws in the disability and healthcare systems. She strongly believes that disability benefits should provide a livable wage, including automatic access to SNAP, TANF, and healthcare coverage. The current system forces disabled individuals to struggle for basic survival, which is unacceptable.

Looking Forward

Tessa’s journey continues daily as she pushes for systemic change, raises awareness, and supports others in the autoimmune community. She is determined to ensure that no one else has to fight alone.

Through resilience, advocacy, and unwavering determination, she proves that chronic illness may change the course of a life—but it will never define it.

Connect with Tessa

Find Tessa on Instagram, Threads, TikTok, and YouTube at @TeslasFightingChance and @SpoonieNinja.