At 22 She Graduated and Found Out She had Multiple Sclerosis: How that Brought Her to Today.

Maybe you remember the day of your diagnosis: shocking, confusing, chaotic. Realizing the news will change your life, but not quite knowing how. Jessie Ace was 22 years old, finishing up her university studies in design crafts in Leiceister when she received her diagnosis.

Jessie’s Diagnosis

Originally reported in Derbyshire Live, Ace described how she woke up one morning to a funny feeling. Some time into the day, she realized she had lost the use of the left side of her body. She was unnerved, but she she had a busy life as a university student and running a business, so she continued on to attend her last day of classes at De Montfort. She left off seeing a doctor for a week, finally making an appointment after her boyfriends insistence.
At first she heard a mix of diagnosis’s: maybe a homiletic migraine which causes localized numbness, more alarmingly, after this doctor consulted another doctor, she was told they suspected a stroke.  So she continued with appointments and within the days following, she was told she had multiple sclerosis, MS.
Rather than explaining the disease with care and comfort, assuming this 22 year old would naturally be shaken, the doctor said, go home and google it. She inquired about any information or packets the hospital could provide but they assured her the information would be online.

What is multiple sclerosis?

Multiple sclerosis is a neurological autoimmune disease in which the immune system attacks the bodies nerve cells, sometimes permanently damaging them. It results from failed communication between the brain and body. It often goes undiagnosed because of the many different way the disease is expressed, presenting itself on any given part of the body. The muscles and eyes are particularly vulnerable. While varied, MS often causes problems with speech, vision, bladder control, coordination, numbness, and weakness. It does not have a known cause or cure, but there are treatment options available.

Jessie’s experience post-diagnosis

All Jessie found on the internet was frightening and anxiety provoking. The images and stories of the horrors of the disease loomed over her, and the darkness of MS shadowed over her future. She did not find any comfort with the online community, rather it invoked fear and isolation. She recoiled. She found herself locking herself up at home, not communicating with friends about the disease and living away from her family. She described how her roommates didn’t know what to say so they said nothing. It led her to feel profoundly lonely and isolated as she too, didn’t know what to do or how to feel about this new facet of her life. She spent the time severely depressed. There were the physical symptoms which are taxing and tiring, but further, the mental anguish of accepting the physical incapacity and how this changes the path she had envisioned. After four months, she finally saw a neurologist. She began to accept how her life had been altered.
She describes her daily symptoms: fatigue, memory issues, weakness. Some days her symptoms are front and center, some days, it fades to the background. She changed her work trajectory, quitting the business she had made which involved crafting, designing, ceramics, and other arts that she had studied. She had planned to create illustrations for materials, but she found this no longer provided enough meaning for her. Instead, she decided to dedicate herself to something that impacted her more: working to reframe MS and help other patients by presenting a different side of the disease.

Jessies Life Today

Since this time, she has written blogs for MS Societies in the US and UK, worked on the Disabled to Enabled podcast featuring patients of various health conditions which discusses the mental strength they use to push beyond their illness in order to inspire others to do the same. She has bloomed into her job as a writer, including in Momentum Magazine, MS Matters Magazine, and New Pathways. She’s gotten married and is self employed, something which gives her the flexibility to respect her MS needs, fitting in midday naps. She says that now, years down the road, she loves her life. She wants other MS patients to see this too: she’s dedicated to making MS less scary and try to prevent other MS patients not have the same painful experience when diagnosed as she had.

What was your experience when receiving your diagnosis? Share your stories, thoughts, and hopes with the Patient Worthy community!

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