Fibromyalgia Has Totally Changed My Relationship With My Body

A version of this article originally appeared on VICE Belgium.

Scientifically, fibromyalgia is known as a syndrome, AKA a group of symptoms that don’t have a specific cause. It mainly manifests as generalised chronic pain, which can cause other issues like sleep disturbances, memory loss and involuntary leg movements. “The disease here is the chronic pain rather than something causing it,” explains Dr. Yasser Mehrez, a NHS consultant in pain medicine and lecturer at the University of Buckingham.

“Pain is a problem that affects human beings on a bio-psycho-social level,” Mehrez continues. “So there's a biological component – the patient feels pain. Socially, it affects their activities and has an impact on their quality of life. And psychologically, it affects them negatively too – they may feel angry, depressed, anxious and much more can happen.” This aspect is particularly important, as some research suggests people’s perception of pain is more severe when they’re mentally unwell, feeding a vicious circle of suffering.

By its very nature, pain is totally subjective. That’s why there’s no specific test for fibromyalgia – nor a single approach to treatment. “The main aim of the diagnosis is to make the clinicians aware that this isn’t actually about treating the pain,” Mehrez continues. “It’s about the biopsychosocial aspect of it.” There’s no cure for the condition, so effective treatment helps patients manage their pain so it doesn’t become a burden on their quality of life. 

That all starts with a thorough, individualised assessment that takes into account what the patient really needs, Mehrez explains. From there, doctors work on a multidisciplinary approach to treatment, combining traditional painkillers with physiotherapy, gradual exercise and psychological support. “Yes, it sounds like too much of an investment,” Mehrez says. “But in the long term, you do save lots of money in GP visits and trips to the emergencies.”

For Van den Block, her fibromyalgia diagnosis came as a relief – but it also meant she had to radically rethink her relationship with her body. After years of dancing and mastering how to control her every movement, she suddenly had to accept a body that wouldn’t, at times, cooperate. 

Van den Block’s physical state often keeps her bedridden: Under these circumstances, holding down a job is quite hard. “The contrast with my life before is really depressing,” Van den Block says. Before, she was quite happy, carefree and spent a lot of time out with friends. “All of a sudden, my world just got so tiny. Life with fibro is a constant battle.”

This major shift in lifestyle was compounded by Van den Block realising she had to face the music over just how inaccessible the world around her is for people who aren’t able-bodied. “Over time, you really start to feel marginalised,” she says. “It’s not right. Just because I can’t work, or because sometimes I need a cane, doesn’t mean I should be shut out from society. We shouldn’t have to be fighting all the time to be seen.”

Over time, Van den Block’s illness has taken a toll on her self esteem. Once, she decided to refuse a prescription because her doctor told her it would lead to weight gain. “I know this sounds superficial, but my figure was the last thing I still recognised in the mirror,” she says. “If I had to say goodbye to that too, I don’t really know what would be left of me in this body.”

At first, accepting she needed a cane to move around was tough, too. But paradoxically, it also became a way for her to let people know she’s actually sick. “Fibromyalgia is almost an invisible illness,” says Van den Block. When she was first diagnosed, some people in her social circle didn’t understand and tried to suggest she was exaggerating her symptoms for attention. “I’ve lost friends because of it,” she adds. “Why should I have to prove to them how much I’m hurting? It just adds a whole extra layer of crap that I could really do without.”

When it comes to romantic relationships, Van den Block decided to stay single for a while, worried that her illness would become a burden on her partners. But of course, her sex drive is still there, so she resorted to hookups to scratch that itch for a while. Most of the time, she didn’t even tell her partners about her condition. “It helps me keep some distance from it,” she says.

For a while, she was sleeping with a friend who also has chronic pain. “It brought us closer together,” she explains. “It meant we understood each other without having to explain or justify things.” This guy understood her issues with having a full-on relationship right away, and that she might need time to recover after sex. “We’d text from our respective beds and laugh about it,” Van den Block says. “That meant the whole thing wasn’t centred on the pain itself, but just on the experience we were having together.” 

At some point, though, Van den Block realised she was curious about having a romantic connection, so she tried her luck on Tinder. Immediately, she had to figure out whether she wanted to be honest about her illness. In the end, she decided to go for transparency, “It’s a way of weeding out people,” she says.

Eventually, she ended up matching with a former classmate. This guy didn’t know much about chronic illness, but he really cared about her and made a point to adapt to her life. “For example, if I tell him I’m not feeling well or I have to cancel a date at the last minute, he never doubts me or asks me to justify things,” she says. “It’s a huge weight off my back.”

Van den Block’s face lights up when she talks about her relationship – something that demands a great deal of her energy, but also brings her the happiness she’d all but written off. But it’s not all sunshine and roses, either. “It’s a hell of an adjustment for me,” she says. “For example, it’s really hard to spend all my time with someone who works so much – seeing that really rubs my nose in the fact that I’m disabled.” 

The fact that Van den Block can’t work also means she doesn’t have the financial resources to do what she wants with her partner. “I let him pay for things, and I try to contribute in whatever other ways I can,” she says. “For instance, I have friends who work for different clubs, so I try to get him in for free.”

As for the future, Van den Block doesn’t really think she wants kids, as she fears she wouldn’t be able to take care of them. “Plus, there’s always the risk I’d pass my illness to them,” she says. 

What she does find fulfilment in is sharing about her life with fibromyalgia on social media. “I talk really openly about everything that happens to me: The good and bad days, the hospital visits, the small and big daily struggles,” she says. “Living with a disability or an illness really isolates you, physically and mentally – and obviously, the lockdowns didn’t help. So being in contact with that community keeps me going. Honestly, it contributes to my fibro healing as much as my doctors do.”