Editor's Note: YEN.com.gh features a young woman in Ghana living with Fibromyalgia Syndrome, a incurable disorder that is widely unknown especially in Ghana. She agreed to be featured under the condition of anonymity. Her story seeks to bring awareness to the disorder and what it's like living with it.
What is this madness that makes me// carry myself into the future, // leaving happiness behind, // torturing myself this way?
A writer, poet and literary enthusiast. Life on the outside looks pretty normal. She is on her way to earning her PhD, and is among the leading new faces in Ghana’s writing scene.
“I am a writer, I am a literary enthusiast, I blog. I am serious about building a writing career and I’m also an academic. I also love food, which I want to develop and do something with,” is how she introduces herself.
K. is a young woman living with a condition called Fibromyalgia Syndrome. This chronic condition is still widely unknown, especially in Ghana. With the ongoing research about it, there are still differing schools of thought on whether it is an autoimmune disorder or a neurological one.
What is Fibromyalgia Syndrome?
FMS is characterized by chronic widespread pain, which affects the muscles, bones and soft tissues. The disorder which incurable, is generally accompanied by chronic muscle pain, fatigue, sleep and mood issues, and sometimes cognitive challenges.
K’s earliest recollection of any serious illness was in 2009, when she felt a sharp pain in her chest. Upon her visit to the doctor, she was prescribed Vitamin C and cough syrup.
“I didn’t think the doctor’s prescription was right. I was concerned about the pain I felt in my chest. So when I got home, I asked my parents to take me to a different hospital.”
At the clinic, she was diagnosed with a severe kind of pneumonia, as instead of fluids filling up her lungs, it was blood. She was immediately admitted and spent some time in the clinic.
However, it was in 2010 that K. started to exhibit symptoms of her condition. It was a long road through these initial signs, as the doctors could not explain to her why she was experiencing these symptoms or what caused them.
She had to move from hospital to hospital, and take several tests.
“It was after I met a neurosurgeon during one of my hospital visits, who then referred me to Korle-Bu, in 2015, that I was fully diagnosed. So before my diagnosis, it was nothing by treatments for whatever symptoms I was going through. I used to be in so much pain, with paralysis with legs, burning sensations. I had to be carried to the hospital often," K. says
It was until her official diagnosis two years ago, that she found out these symptoms were known as ‘flare-ups.’
After years of going through several treatments for her various symptoms which only served to lessen her discomfort at the time, K. initially felt relief at finally putting a name to her condition.
However the relief was short-lived.
“My immediate reaction when the doctor told me there was no cure, was not good. It was a lot to take in. Because after finally getting the diagnosis, I expected them to just scribble some medication but to find out the journey was actually just starting, it was a lot to deal with," she adds.
It was a numb feeling, as one would expect, especially with breaking the news to her loved ones. She wondered how to tell them, since they had all been through the pain and financial constraints together.
“But they are very supportive,” she states.
A typical day in her life
Living with a chronic illness, any chronic illness is not and would never be easy. One can only imagine what a typical day in the life of someone living with FMS is like.
“I wake up like a zombie. Because of my previous night medication, I wake up in the morning but I can’t leave my bed yet. Then I go through a morning stiffness. There is always a baseline pain you deal with, which I usually don’t pay attention to. I can only tell whether there is a flare-up starting if it goes above that baseline. Sometimes I think I have diarrhea and constipation at the same thing. My blood pressure could drop just like that. You deal with chronic migraine and chronic fatigue.”
Living with a chronic illness comes with certain strict measures to ensure severe symptoms are not triggered. K’s routine is to make sure she does not stress herself so much, as that leads to a flare-up.
These lifestyle measures are necessary to prevent bad days, like the last one K had, where she recalled passing out at work and being rushed to the hospital.
“I wake up, take my medication. I get to work and I make sure I keep hydrated. I make sure to stay happy. Because the number one flare up trigger is stress, so I make sure to do these things every day," K. tells YEN.
The Rheumatology Initiative
Since finally find out what autoimmune condition she actually had, K. found herself in support group for persons living with similar conditions with The Rheumatology Initiative or tRi Ghana, which was founded by Dr. Dzifa Dey, one of TWO Rheumatologists in Ghana.
The core objectives of the organization is to raise awareness and raise funds for research on the autoimmune conditions that affect young people in Ghana.
It also offers a support group for persons living with these conditions. K. joined the initiative after her diagnosis in 2015, and now volunteers with the team, using her skills as a writer and social media enthusiast.
With supportive family and friends, K. also finds her writing to be a strong coping mechanism. She often blogs or ‘rants’ about living with the condition.
“My only motivation is God. Because in spite of all the good things that go on around me, I still struggle with my emotions, as I constantly struggle to stay in whatever good vibe is happening in the moment,” she says.
The Health Service and People with FMS
In a country that is still facing challenges in terms of infrastructure development in its health sector, it comes as no surprise that there is very little to no awareness about autoimmune conditions and the people living with them.
K. believes it is necessary to get the conversation going about autoimmune disorders, as through her description of a typical review day, it is clear there is a need for more improvement in the health care delivery system for people with these conditions.
“Review days are a nightmare. Rheumatology clinic is on Mondays. So it’s a challenge first of all to explain to your employer about why you cannot be present at work on a Monday.
Then there’s the actual hassle of the day. You have to be at the clinic before 10am, then have your vitals taken at 10am not because the doctor is ready to see you, but because there are a lot of patients present for their review as well. Then you have to wait for the doctor to get in by 1 pm or later. So by the time you meet a doctor, it’s late afternoon. And it’s not a conducive environment for people with such conditions, because the number one trigger of the flare ups is stress and that place is stress headquarters,” she adds with a chuckle.
Review days tend to be full days, because as K. explains, the consulting doctors are stretched out with many different obligations. They have to start off with their ward rounds, teach a class and review old and new patient files before they settle in to see the day’s list of patients.
K. hopes to see a society that becomes more aware of the disease and how it affects the people diagnosed with them, as well as see the state establish infrastructures that will make life better for people like her.
Living, Writing, Laughing
Living with a chronic illness may seem like a painful, unhappy journey to the outside world, but for K. her condition does not define her nor interrupt her plans for the future.
“Sometimes I am surprised at myself. I realized that a flare up is a flare up no matter where you are. And that’s how I handle every day. I take it one day at a time. So I’m going to get that PhD, going to write that book, going to start that food business. I’ll have the happy healthy children I want to have. I won’t let this condition stop me from living the best I can," K. states.
And with a resolve like that, there is nothing stopping her from being the best of herself for the long life ahead.
“And though hope may have died, // Gems rise // From charred things so // Something…Something must give. “
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