Anouch is 31. From her small studio Antwerp she has a great view of one of the largest parks in the city; it’s her place, quiet and out of sight. In her free time she likes to dance, cook, play with her cat Mojo and go out. “But that’s on days when I feel good, of course,” she says with a smile.
Then her disease became more serious, Anouch has had to learn to slow down and look at her again body to listen. “I have always been fragile; even as a child I was often sick for extended periods. But a few years ago it suddenly got much worse. In 2020 I was diagnosed with fibromyalgia. To this day I still can’t explain exactly what it is, really, you get a diagnosis when you have certain symptoms like chronic fatigue, severe chronic pain, a general feeling of weakness… Basically I’m just constantly sick and exhausted.”
As a former dancer she always had control over every movement, now she has to learn to let go. And even if her diagnosis allowed her to start treatment, she had to rethink her entire life – now under the guidance of a body that doesn’t always want to go along. Her condition is too unpredictable to work, she stays in bed more often than she would like: “The contrast with my life before is extremely depressing. Suddenly my world has become very small. Sometimes I lie in my bed for days on end while before I was just a very social person, I was always outside and had a lot of friends. I was happy and carefree, but my life with fibro is an ongoing struggle.
It’s hard to find support in a world where everything is made for the able-bodied, with no real consideration for others. “In the long run, you just don’t feel at home. It’s not right: it’s not because I can’t work or sometimes need a cane to walk that I shouldn’t be part of society anymore. Society must also adapt to us, without us constantly having to fight to be seen.”
“One day a doctor prescribed me a drug, one of the side effects was weight gain. I rejected it. I know that sounds superficial, but my figure is the only thing I recognize of myself in the mirror. If I had to give that up too, I didn’t know if there would be much of myself left in this body.”
The cane was a confrontational step for this young woman who otherwise felt okay about her body; but she had no say in it, you just do it and move on with life. “If I think it will work, then it will work. Honestly I think I look good, I like how I look, I’m happy to be who I am, I’m confident. And then another day I feel so bad that I need my cane or a walker to walk… And then I also see it in people’s eyes, how their image of me changes. It’s times like these that I really wonder who would still want me. A 31-year-old chick who can barely stand up without help, no one finds that sexy.”
On the other hand, the visible things like her cane or the vibrations are the only things that make her disease visible to others: “Fibromyalgia is an almost invisible disease. In fact, there are always people who think I’m exaggerating, that I’m doing this for attention. I’ve already lost friends because of that, people who think it’s fake, that it’s in my head… Why should I have to prove to them how much pain I’m in? And how can I make them understand if they don’t believe me. It really is an extra layer of bullshit that I don’t need at the moment.”
“I’d rather be alone than put someone else through this.”
Until recently, Anouch chose to remain single of her own volition: she was afraid to introduce someone new to her life. “I’d rather stay alone than put someone else through this; it’s bad enough that I depend so much on my parents when at my age I should be able to take care of myself.”
But it’s not because you suffer that you don’t have a libido. So her solution was to have sex without relationships. With the help of alcohol and hormones, one-night stands are usually painless and stress-free – on a good day. “I usually don’t even tell them about my fibro. That’s easier for everyone, it’s a way to keep your distance.”
Of course, one-night stands don’t immediately fill the emotional void. Fortunately, Anouch could also count on a multiple booty call with a friend for a while: “He also had chronic pain and that brought us closer together, we understood each other without having to explain and justify it. For example, the fact that we didn’t want a relationship: we were on the same wavelength and it all seemed logical. Sometimes it took several days to recover from a wild night if we were a little too wild; but then we would text from our respective beds and we could both laugh about it. It was not just the pain itself, but the experience we shared.”
One day, Anouch decided to install Tinder, “just to see if I was ready to have someone new in my life.” When she filled out her profile, she pondered some crucial questions: “What do I put in my bio, do I talk about my illness? Do I post a photo with my walking stick?” In the end, she chose to be transparent. “It is a form of pre-sorting.”
Soon she met a guy who also had chronic pain. “That was an icebreaker for us, I felt good about it and thought ‘okay, let’s try it.’ But after several weeks it became clear to me that while he understood the physical aspect of my condition, he did not “believe” my psychological concerns. For example, I would tell him about my ADHD hyperactivity, and he would tell me to stop, that it was all nonsense. If that’s the case, I’d rather be alone.”
Luckily – once she kicked that loser out of her life – she had a match with an old school friend. “We had never really talked before, but recognized each other immediately!” She decided to give it a shot, despite being a little anxious about their differences. “He’s not sick or disabled, so sometimes it’s really challenging to keep up, but he really cares about me and is doing his best to adapt. For example, if I say things are not going well or I cancel a date last minute, he never asks me to justify it, he doesn’t question me when I say something. And that is quite a relief.”
Her face lights up when she talks about this relationship, which is quite an effort but makes her feel so happy and carefree, a feeling she almost lost: “He constantly compliments me, tells me I am beautiful and that he admires how much I work on myself and how well I know myself. With him I feel more confident and safe.” But not everything is rose scent and moonshine. “It is still a serious adjustment.
It is extremely confronting for me to have someone around who does so much work in a day: suddenly I am pushed with my nose on my disability. And financially there is also a big difference: I want to do so many fun and cool things with him, but I can’t always afford that. So I accept that he pays and try to compensate by contributing in my own way. For example, I have a lot of friends who work in clubs, so I can usually get it for free when we go out.”
Her future? He sees Anouch without children. “Honestly, I would think it selfish of myself. Bringing a child into the world without being able to properly care for it – worse, to lean on that child and place a burden on its shoulders that it never asked for, while also running the risk of contracting my illness. get it – no, I can’t get that over my heart.”
So she found her passion in activism. “On social media I talk openly about everything that happens to me: the good and bad days, the visits to the hospital, the small and big struggles every day. It has helped me to get to know people who are going through similar things, there is a lot of exchange. Living with a disability or illness really isolates you, both physically and mentally, and the lockdowns have not helped at all. To be able to share in such a community helps me to persevere, to feel less alone in my adventures. For me, it is as important a part of the treatment of my illness as the specialists who guide me.
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