“I hate…” begins Niemah, glossy red nails clawing the lid off her nearly overflowing coffee cup, “that I always end up ruining a pair of jeans every time I do this.” Reaching for an assortment of brown and white sugars, she leads the way through the coffee shop to an empty table with all the knowing of someone who visits daily.
Upon her request, we met in her local Starbucks, “at least you know what you’re gonna get” she says with a shrug, justifying her choice. Upon first impressions, Niemah is nothing like what I imagined. Confident, funny and seemingly strong – not the typical description you can give of someone living with a serious illness.
She is a 20-year-old university student of English literature with ambitions of becoming a published author, and a proud Muslim happily engaged to her boyfriend of two years, Bashir. This is what she insists you must know of her before you learn that she lives with the debilitating musculoskeletal pain and fatigue disorder, Fibromyalgia. “I don’t introduce myself by mentioning my illness first – that doesn’t define who I am. I like to present what I am most proud of first: my education, my family, my religion.” But that isn’t the only reason she has reservations about people knowing straight away, “chances are people either won’t know what fibromyalgia is, or they think it’s all in my head.”
Statistics: fmaware.org/Graphics: Christian Onions
While most illnesses are related to one part of the body, or one system, fibromyalgia is a more complex condition that can be difficult to understand or diagnose – mostly due to the fact that it can impact the whole body. While scientific research on the issue is limited and the cause unknown, symptoms can develop after a form of physical trauma, psychological stress, physical injuries or illnesses. To say that Niemah doesn’t let this hold her back in life is an understatement. When we met on a cold Wednesday morning, she gave me an insight into the surprisingly optimistic, criminally misunderstood life of a fibromyalgia sufferer.
Statistics: nrc.md/Graphics: Christian Onions
“Like most people, you live for years completely misdiagnosed. For me, it was four years ago that the pain started to become something I couldn’t ignore.” Half the struggle for people living with fibromyalgia is reaching the point of diagnosis, with the immense lack of knowledge on the issue often leading to months, or even years of misdiagnosis.
For Niemah, it was an eight month nightmare of agonising pain before she even heard of fibromyalgia for the first time. Watching Niemah whilst she describes the pain is like watching a perfected routine. This is something she has had to do more times than she can remember, “It’s hard for people to understand this because if you get a feeling of pain you can usually link it to something, like “oh, yeah, I have this pain because I worked extra hard at the gym this morning” but you take it easy, a bit of rest, and its gone. Fibromyalgia is like that, but you can’t link the pain to anything you’ve done, and it doesn’t go away with rest. That’s the best I can explain it.”
Statistics: nrc.md/Graphics: Christian Onions
The bubbly, warm character sat in front of me becomes more subdued as we delve further into her story. Eyes glazed over, Neimah relives her time in college before being diagnosed; “I was regularly missing classes, I had my friends and teachers constantly frustrated with me, I was falling behind on my work and had this pain on top of all of it.”
Answering to other people was one of the most difficult things for her, “I had no explanation. You know, people would say “so what is wrong with you?” and I’m like, “I don’t know.” You look so stupid saying that. Most people know what is wrong with them when they are ill, or they certainly don’t have eight months of not knowing what their illness is.”
In a bid to lighten the atmosphere, we change the topic to what life is like today. She sits upright in her chair, sighing in relief, “I wish I knew back then that life wasn’t going to be awful all the time. There’s obviously a long way to go for sufferers in general – there’s still no cure, no certain known cause. But for me, in this moment, life is good.”
Life for her isn’t without its difficulties, though. “The pain is still there” she states, “but the way I deal with it has changed.” It is a process, she informs me, that took her “a bloody long time” to get right – everything from deep tissue massages and yoga to marijuana cream have all helped her to deal with pain. “Recently my arms and wrists have been my problem areas and the cream worked so well for me. Obviously I don’t do it all the time, but I’ve found what works best for me based on where the pain is at the time.”Fibromyalgia has been in the spotlight more than ever in recent months, due to Lady Gaga’s Netflix documentary, where she reveals that she has been suffering with the illness for some time. Released in September 2017, Gaga’s documentary brought much needed attention to the issue, resulting in a new peak in google searches of ‘fibromyalgia’.
“That was so amazing” Niemah explains of the moment she heard, “to have someone as famous and adored as her coming forward to say “this is real, this is happening and it’s happening to me” was just so unbelievable.” She cites this as a turning point for the illness, “even if people still don’t know what it is, they probably know Lady Gaga has it and all of a sudden it’s ‘real’.”
Global interest in fibromyalgia over the last five years based on google searches. Source: trends.google.com
Taking a final gulp out of her coffee cup, stained with maroon lipstick, she offers advice for anyone recently diagnosed; “Try not to stress. I know that’s really annoying to hear, easier said than done, I know. But stress will only cause you to be in worse physical pain. Get to know your body. Once you understand your body, you can begin to find pain relief. Talk to people – find forums online. When you’re first diagnosed I think it is so important to know that there are thousands of people out there that feel the same as you – you aren’t alone.”
You can learn more about Fibromyalgia here.