As reported in Image, Sarah of Dublin had her life turned around when at age 10; she became one of the youngest people in Ireland to receive a diagnosis of fibromyalgia, a disorder characterized by intense pain. Sarah described how drastically her life changed when she began to experience symptoms of the rare and invisible illness:
“I went from being an extremely healthy and active, bright young child to a child who lived in constant pain and was highly medicated for most of my young adult life.”
Fibromyalgia
Fibromyalgia is a disorder that causes musculoskeletal pain throughout the body. Other symptoms include tiredness, mood changes, memory issues, excessive sleep, and the characteristic pain. Doctors believe the disease over stimulates pain receptors, applifying pain signals in the brain. While no cure currently exists, there are different treatment options that focus on reducing pain and inducing relaxation.
Before The Onset
Sarah described how in childhood, she was super active. She was obsessed with horseback riding, attending lessons and camps. When she was 10, she found symptoms lingered after recovering from a viral infection, such as fatigue, lethargy, concentration issues, and leg pain. She said,
“I can remember going to Blanchardstown Shopping Centre vividly and having to stop on a bench in tears because I couldn’t walk any further due to pain. From there I remember seeing the GP and “growing pains” being mentioned, but my symptoms got worse. Eventually, I was sent to Temple Street where the consultant diagnosed me with Fibromyalgia.”
Even as a child, she faced skepticism from all sides about if she really felt pain:
“As a child that is extremely hard to hear but I always knew I wasn’t making it up, I was a shadow of my former self and lived in constant pain.”
Adjusting To Disease
The next 19 years were shadowed by the disease. She described unending doctors appointments and new specialists.
“Fibromyalgia, in particular, can be quite complicated and lead to other problems so there’s always a new specialist being suggested: rheumatologists, pain specialists, psychologists, psychiatrists, urologists, cardiologists, neurologists.”
Over time, doctors began to respect the validity behind her experience more. Still, she was bogged down with side effects and symptoms, and her disease remained largely misunderstood. While most teenagers were experiencing the ups and downs of adolescence, she scarcely had time for that between medical appointments.
“I didn’t want to be different from my friends but at the same time, I wanted attention for being sick…I think I craved the attention so much from being unwell because I was so sad about it, also I felt I had nothing else to talk about, I didn’t have hobbies anymore or cool things to tell people like my friends did, I just had my illness stories and hospital visits and operations.”
Sarah describes the next decade littered with more and more medical ailments, while continuing to not have the extent of her issues acknowledged by medical professionals. She received diagnosis after diagnosis.
“In my twenties, I was then diagnosed with stage 4 endometriosis, occipital neuralgia, sleep apnea, chronic fatigue syndrome, and anxiety. Although endometriosis can be proven with diagnostic surgeries, the rest of my conditions are invisible to the everyday eye. I am blessed to have had the same friends since I was a child and a wonderfully supportive family, however, I have encountered more hostility and disbelief from doctors and peers in the past two decades than I care to think about.”
Because her diseases are “invisible,” she finds it hard to make people understand why she had to retire from her job so young. She no longer had the mobility to go to work at age 29 due to her health related difficulties, but the impact of that change has not left her mind since.
“It was not my decision and I am devastated. I hate not having a career, not always being able to attend events, and not always being able to properly explain why when I look well (ish).”
She benefited from treatment, undergoing various surgeries, which alleviated the worst symptoms. Her life was changed forever when she met a pain specialist who suggested she get fitted for a spinal cord stimulator. This massively improved her mobility by curbing the worst of the pain. Now she finds it easier to manage, though she mourns the life she had before. She describes a deep longing for work:
“Even though it took every little bit of my energy, I loved every second of it. I’ve never been the person that wants to sit at home just because I’m unwell. It gets to me when all of my peers are around me talking about their work week and I have absolutely nothing to contribute to the conversation.”
Now, she is grateful for the treatment and coping mechanisms she received from her health insurance. Sarah said,
“In terms of widespread support for chronic illnesses, I think that there probably isn’t adequate resources out there, however, I think the more pressing issue is educating people with those illnesses about medications, therapies and surgeries. I am very blessed to have private health insurance thanks to my parents, without that I wouldn’t have had access to half the doctors and therapies I have had. “
