If she counted them, all the stares, looking eyes, she would have come up with a sadly high number. But they don’t hit Joyce Spencer anymore. Because Joyce knows: this is just my body. I can’t help this. And I’m pretty enough.
She was about fifteen or sixteen when her legs grew thicker and thicker. “I was always the heaviest girl in the class, but suddenly I was fat in some places, while I didn’t grow in others.” Crazy, Joyce thought, crazy, her parents thought too, and so they reported to the hospital. The diagnosis was made quite quickly, ‘it’s lipedema’, the doctor said, ‘there’s not much that can be done’, and he turned around. “That moment, I will never forget it. It is disastrous to say such a thing to a teenager, because there is something you can do about it. Start with your mindset. Self love. Acceptance. Take good care of yourself.”
Out of proportions
Lipedema means ‘fat swelling’. It is a congenital condition that mainly manifests itself in women, especially from puberty onwards, and less often after hormone treatment or pregnancy. The fat that is normally distributed somewhat fairly in the body is not broken down and collects in the legs – both above and below – and the arms, buttocks. “You get a little out of proportion,” says Joyce. “You often see women above two or three sizes smaller than below.”
It hurts. Joyce struggled for years with restless legs, stitches in those legs, cramps, pain in her knees. “Summers are terrible,” she says, “the heat makes you swell even more.” She often suffers from stiffness – she works at a travel agency and when she gets up for a coffee or a break, it is hard work to get out of that chair.
Standing on her feet for a long time? Difficult. Get out of bed quickly, or from the couch? Idem. She bruises easily, struggled with fatigue for years, poor condition, sports did not work.
Something’s not right
“And then I’m not even talking about the psychological complaints that many women experience,” she says. “Because it does something to you that you are suddenly thicker in certain places. My ankles and knees also look very different – you can distinguish them much less well from my legs than with ‘healthy’ people. Something is not right my legs.”
Women who also have this and Joyce spoke, are often insecure. Think themselves ugly. Too thick. Not worth it. “But who says ‘fat’ and ‘ugly’ are the same thing?”
Some prefer not to leave the house, have not been to the beach for thirty years, avoid the swimming pool, the sauna is a no go. “And I get it too,” says Joyce. “People just look. Especially children, I’ve had a boy nudge his mother: ‘Mama, look at those legs!’ And when I look back, at adults, they quickly look away, don’t they. But I just go to the swimming pool, you know. I have – yes, nice Rotterdam style – shit on it.”
No lamentation
This story, it should not become a lament, says Joyce. She wants to tell what she has, to show that not everyone can (or wants to) do something about being overweight. She can diet what she wants, exercise what she wants, her body just keeps making fat.
She grew up in a family with two loving parents in Rotterdam, who at times worried about her weight. “Women with lipedema can wear support stockings to ease the pain and prevent further fat accumulation in the lower legs. I had them measured, but never wore them.” She laughs. “Stubborn teenager, eh. Yes bye, I’m really not going to wear that.” A lot of emphasis was placed on what Joyce ate. “I was just a kid who ate three meals a day, and sometimes felt like something tasty in between. I didn’t eat extremely much, but I was told a lot.”
The obesity got worse when Joyce got into a relationship. “We had two beautiful daughters – and those pregnancies didn’t help, of course. But I really started to gain weight when my husband was mentally very bad. He’s been hospitalized three times, it’s horrible to have someone you care about so much. keeps, looks like I ended up pretty much on my own with my girls, a hell of a job, I can tell you. One goes to drink or smoke in times of dull misery, and, yes, I went to eat. I sought comfort in that. I ate everything that was loose and stuck, and yes, then those kilos will add up, if you already have a disturbed fat balance.”
Room
In the end, Joyce divorced her husband, which hurt her a lot, but also gave her space, because: “I was crushed.” As a bachelor she went out a bit more, noticed that she had some shamans, and that attention gave her ego such a boost that she suddenly realized: I am worth taking good care of myself.
She went to the gym for fitness classes. Went to eat healthier, low-carbohydrate food – because that can also help a bit. She underwent special massages, a treatment against fluid retention. She lost thirty kilos on her own. “It felt good, healthier, fitter, but: those legs stayed full. That fat stayed there. I just couldn’t get rid of it.”
It remained restrictive. If she wanted to spend an afternoon shopping, it would be: park the car at the mall, as close as possible to the elevator, take the elevator up, shop, do her thing (and hope for a short queue at the checkout), shop again out, elevator down, car back in. “It didn’t work in any other way. I was in too much pain, too bad a condition.”
A few times she entered an intake interview for liposuction, the suction of the lipedema fat. That could help with the pain. A few times she came out with a folder full of information leaflets. A few times she did nothing with it. The folder disappeared somewhere in a corner in a drawer. ‘An ostrich’ her mother sometimes called Joyce. Head in the sand. Do not think too much. Just carry on.
Always that pain
“She was right. I was mainly busy with work, being a good mother. And I wasn’t insecure either. I just went to the pool. I taught myself, over the years, to focus on what is nice is about me. I have a nice smile, nice appearance, beautiful brown-green eyes, a slim waist, nice character. I know how to dress nicely, accent on my breasts, buttocks, the points that I like better than my legs. “
But yes: always wear wide trousers, or a long skirt or dress. Jeans? Not possible. Boots? Didn’t fit over her ankles.
“And that pain. Always that pain. When you’re in pain, you’re so limited in your choices and the things you want to do in life. My partner and kids never made me feel like I wasn’t pretty enough, “But they were concerned about my health. Because you enter a vicious circle: those who have pain with movement, move less and less, gain weight, and get more pain. Some women also waddle; that’s what you’re going to do.”
All reasons that Joyce still entered into an intake interview in 2021, head out of the sand, and scheduled a liposuction. No guarantees, the doctor said, but well worth it. “And that was it. Although it cost me twelve thousand euros, all in all, because nothing – really so ridiculous – is reimbursed. Fortunately, I was able to borrow it from my father.” The treatment is not reimbursed in the Netherlands, because it has not yet been scientifically proven to help – more research is needed, stated the National Health Care Institute last year.
It was hard work, the procedure itself was exciting, and painful despite the local anesthetic – Joyce did curse, yes, ‘you are a Rotterdammer or not’.
Where you stand
In total, Joyce entered the clinic four times. “Every time I saw my legs get thinner. It’s really bizarre. It happens in front of you.”
Speaking of standing: it’s easier. Much easier. There are still knee problems, and running marathons will not work, but: the cramps and stitches are almost gone. “I just got back from a week in Gran Canaria with the girls. Flying – sitting still for a long time – gave me no pain, no restless legs for the first time in my life. And on vacation: I just wore a short skirt, just over the knee, and I could walk for a long time. Mobility is freedom.”
It was a nice holiday, and a necessary one, because she describes what she is in now as ‘a tough period’. “I now realize that my pain has swallowed up a lot of me in recent years. I am now more aware of my limits, I let myself be pushed around less. And now that the pain has subsided, I am a lot more emotional. As if there… suddenly room for it.”
She just lets it happen. She tries to be as open as possible about it, towards her partner, her daughters, family, friends, colleagues. And also: to other women who have the same disease. She started a Facebook page for fellow sufferers. He now has more than 700 followers. She puts tips on it, shares stories from others, and will soon be organizing a weekend away with 33 women, by the sea, with dance workshops, a lecture – informative, fun, and anything but a weekend of lamentation, ‘there’s no need for that’.
“Some said they were scared to do something on their own, so far from home, so they normally never do that. I spoke to women who mainly do indoor activities with their children. They leave everything outside the house to their partner. Yes, I was shocked by that: for me my illness, and the outward defect that I have in the eyes of others, has never been such an obstacle.”
Curvy
“I can say to myself: I have ugly legs I have ugly legs I have ugly legs, but I can also say: I see myself as a curvy woman. I can’t give a fuck that I have this, but I can give a fuck how I do it handel.”
She hopes to be able to convey that feeling to other women. “That approach, that mindset, has taken me a long way. If something is wrong with you, you don’t have to sit in a corner. Life can be really beautiful. When I look at what I’ve been through in my life, and the pain that I’ve had – then I’m proud to be standing. Stronger than ever. And maybe not on legs that are perfect, but legs that can carry me, that can take me further.”
Sunday interview
Every Sunday we publish an interview in text and photos of someone who does or has experienced something special. That can be a major event that the person handles admirably. The Sunday interviews have in common that the story has a major influence on the life of the interviewee.
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2023-08-13 06:13:09
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