My Lifetime in Hospitals: Facing a Terminal Diagnosis at 19

BREAKING: Comedian Yvonne Hughes Finds New Lease on Life Through Comedy After Battling Devastating Illness

Edinburgh – Comedian Yvonne Hughes is captivating audiences with her show “Absolutely Riddled,” a testament to her resilience and newfound joy. Nearly four years after meeting her partner, Alan, online, Hughes, who once struggled to envision a future, is now embracing life and learning to quiet the anxieties that once held her captive.

Hughes describes a profound shift in her physical and emotional well-being. “I used to breathe so shallowly that I had to take a – haa! – sharp intake of breath – to feel I was breathing,” she recounts, illustrating the suffocating grip of a debilitating disease. The simple act of fastening a seatbelt was once an ordeal, punctuated by involuntary gasps and spasms. Today, she can effortlessly buckle up and drive away, a freedom she cherishes.”I can walk and talk. I can laugh without wetting myself or going into a convulsion of coughing, pulling a muscle or breaking a rib,” she marvels.Describing the illness as “horrible, horrible,” she acknowledges, “It suffocates you. It takes every inch of your breath away. And now it is something I can live with and not die from. I’ll probably live to get my pension.”

Beyond the physical recovery, comedy has injected “fun, joy and laughter” back into Hughes’s existence, providing something deeply personal. Having never married or had children, she lacked a sense of community. “I had never found anything for me in my life,” she states. “There were people getting their careers and their lives sorted. Comedy was the one thing that was for me. And it still is. Just for me.”

Evergreen Insight: Yvonne Hughes’s journey highlights the transformative power of finding a passion, especially when facing adversity. Her story serves as an enduring reminder that purpose and community can be found in unexpected places,offering solace and strength even in the face of life’s most challenging battles. It underscores the importance of pursuing activities that bring personal fulfillment, asserting that these endeavors can be a vital source of healing and self-revelation.Yvonne Hughes: Absolutely Riddled is currently showing at snug at Gilded Balloon Patter House in Edinburgh until August 15th.

What strategies did you find most helpful in advocating for yourself within the hospital system as a young adult facing a terminal diagnosis?

The Initial Shock: A Rare Disease Emerges

At 19, life felt limitless. University applications were in, friendships were blossoming, and the future stretched ahead, bright and full of possibility. Then came the fatigue. Initially dismissed as stress, it quickly escalated into debilitating weakness, persistent pain, and a constellation of baffling symptoms. Months of tests followed – blood work, scans, biopsies – a frustrating cycle of waiting and uncertainty. the diagnosis: a rare and aggressive form of mitochondrial disease, a terminal illness with no cure.

This wasn’t a script anyone prepares for. The world tilted on its axis. suddenly, “future plans” were replaced with “quality of life,” and “independence” with a growing reliance on medical intervention. Understanding mitochondrial disease symptoms became my new full-time job.

Navigating the Hospital System: A Second Home

The hospital became my second home. Initially, it was a whirlwind of specialist appointments – neurologists, cardiologists, geneticists, palliative care physicians. Learning to advocate for myself, a young adult suddenly thrust into the role of patient, was crucial. I quickly realized the importance of:

Detailed record-keeping: Maintaining a comprehensive medical history, including symptoms, medications, and test results.

Asking questions: Never being afraid to ask doctors to explain things in plain language. Understanding your disease prognosis is vital.

Bringing an advocate: Having a trusted friend or family member present during appointments for support and to take notes.

Understanding medical billing: Navigating the complexities of healthcare costs and insurance claims.

Frequent hospitalizations became the norm. Each stay brought new challenges – managing pain, dealing with side effects from treatments, and the emotional toll of prolonged illness. I learned to distinguish between the different hospital staff – nurses, technicians, therapists – and to appreciate the unique contributions each made to my care. Hospitalization wasn’t just about treatment; it was about survival.

The Physical and Emotional Toll: Beyond the Symptoms

Mitochondrial disease isn’t just one symptom; it’s a systemic failure affecting multiple organs. For me, it manifested as:

Chronic Fatigue: An overwhelming exhaustion that didn’t improve with rest.

Muscle Weakness: Progressive loss of strength, making even simple tasks difficult.

Gastrointestinal Issues: Severe nausea, vomiting, and difficulty absorbing nutrients.

Cardiac Complications: Irregular heartbeats and an increased risk of heart failure.

But the physical challenges were only half the battle. The emotional impact was profound. Grief, anger, fear, and a sense of isolation became constant companions.Coping with a terminal diagnosis required a multifaceted approach:

Therapy: Regular sessions with a therapist specializing in chronic illness.

Support Groups: Connecting with others facing similar challenges. Finding a chronic illness community was invaluable.

Mindfulness and Meditation: practices to manage stress and anxiety.

Creative Expression: Journaling, painting, and music as outlets for emotional release.

Palliative Care: Redefining Quality of Life

Palliative care isn’t about giving up; it’s about maximizing quality of life when a cure isn’t possible. it focuses on managing symptoms, providing emotional support, and helping patients and their families navigate the challenges of a life-limiting illness. My palliative care team helped me:

Develop a pain management plan: Finding effective ways to control my chronic pain.

Address emotional and spiritual needs: Exploring my feelings about death and dying.

Make informed decisions about my care: Understanding my options and expressing my wishes.

Plan for the future: Addressing practical concerns such as legal and financial matters.

End-of-life care is often misunderstood. It’s not about hastening death; it’s about ensuring a peaceful and dignified end to life, on my own terms.

the Importance of Advocacy and Research

Living with a rare disease highlights the critical need for increased research and advocacy. Funding for **rare disease research