Often young people we talked with described suffering with pains and feeling “sore all over”. Eva described having to sit on a pile of cushions but it still hurt as her “bones were sticking out” Laura said that even leaning against a wall was painful. People had stomach pains and headaches. People described a point when it was difficult to distinguish hunger from other pains, as they felt so hungry it hurt.
“I would feel faint, I wouldn’t be able to do anything, I’d just want to curl up on the bed. But then I’d do that and I’d get to a place sometimes where I’d be completely high on it, I don’t know I’d feel almost like I was on some kind of a drug.” -Annabelle
Circulation and digestion
People with eating disorders can suffer from poor circulation of blood around the body as a result of lowered blood pressure. People suffered from low blood pressure and either a fast or a very slow heart rate (pulse). When the body is starved it slows everything down to conserve the limited energy that is available. For instance, the heart beats more slowly and weakly, to protect its weakened muscle. As a result blood pressure drops and circulation of blood to extremities is poor. This can cause loss of sensation in the fingers, numb arms and legs and some people said their fingers and lips turned blue. Maria constantly had black lips. People were often permanently “freezing”. This meant they had to make changes to their life to adapt' Annabelle wore a thick duffle coat for the whole summer and Elene kept having repeated baths to keep herself warm. Because of the loss of sensation, they could easily burn themselves in the bath because they didn’t sense the water was too hot. Poor circulation caused other problems too: it was very difficult for doctors and nurses to get a blood sample when the blood vessels had shrunk (constricted).
Annabelle burnt herself in the bath when she tried to keep warm. She could barely walk or hold...
Annabelle burnt herself in the bath when she tried to keep warm. She could barely walk or hold...
Age at interview: 22
Sex: Female
Age at diagnosis: 14
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Oh gosh, so many, I mean so many things go wrong. Well I think the cold was awful. It was like right through to your bones, it was like no cold I’ve ever felt before, and it was just like cannot get warm kind of cold.
I remember I used to like burn myself in a hot bath every day because it would relieve me from feeling cold for two hours, because I’d like be burned basically. And also, but then getting in a bath itself wasn’t comfortable because it was hard. And that all, I remember like my, like the bones that are around my bum and like, on the bottom of my back were like so protruding, it was just so, like I couldn’t sit on a hard seat. I couldn’t sit on the floor like, I remember sitting on the floor, I had to put like cushions if it was a hard seat, I’d have to put big cushions on there. Like I’d just wake up with bruises just because I’d been lying on a bed, I’d get bruises and sores, like really painful sores all over my back.
What else? Oh I had like a really bad back. Like because I couldn’t, and my back had lost so much muscle that I it was really under so pressure holding my head up, and so, but I couldn’t stand up or walk for very long because my back would ache so much I’d like keel over. And I had a lot of physio on my back for it, to like make it get better. I got headaches also because my, because my neck wasn’t holding my head up very well either because it was so weak. I just felt like generally weak and dizzy walking around. I had to wake up about five times during the night to pee which is really funny, but apparently it’s a symptom, because you like, you lose loads of muscle so you like lose bladder muscle as well, which was annoying, especially because I didn’t sleep well either. That’s another thing; I just didn’t sleep well at all. I was just exhausted. Yeah it was, oh, yeah horrible.
A starved body can’t make as many red cells, white cells or platelets as a healthy body. Red cells are the ones which carry oxygen around the body in the form of haemoglobin. Without enough red cells people are anaemic. Anaemia commonly affected the people we spoke to. It could cause sores, chilblains and make people bruise more easily. White cells are a crucial part of the immune system. Without enough of these people can’t fight off infections – often people don’t even realise they have infections. Platelets are the tiny little blood cells that stop us bleeding. People bruise easily without enough platelets.
People‘s digestion was often affected. They experienced a number of symptoms including' stomach aches, cramps and spasms, diarrhoea, indigestion, heartburn and feeling bloated. They also suffered from constipation which could leave them in “agony”; Rob couldn’t walk properly because of severe constipation. It was important for people to tell others about the "less glamorous" side of eating disorders as they felt that people weren’t aware of some of the effects. Some people didn’t realise that their physical symptoms were the result of their eating disorder and had tests for other illnesses instead.
Immune system and hormonal changes
Being starved of nutrients weakens the immune system, which is what protects the body from illness. People had been “ill all the time” and more prone to “coughs and colds” and other infections. Laura said she didn’t feel as strong as she had before.
Malnutrition could cause hormonal changes. Some women had tested low levels of the female hormone oestrogen and others had irregular periods or their periods stopped for years. When people were ill they could see their periods stopping as “a good sign” that they were losing a lot of weight. But for many, realising the damage the eating disorder could cause to their ability to have children (fertility) made them want to get better. For some, it was difficult to cope with periods returning as having their period had been one of the triggers of their illness. Fiona-Grace had been prescribed a contraceptive implant so that she wouldn’t have a period at all.
After not having her periods for years, Annabelle's hormone levels were disrupted. She wanted to...
After not having her periods for years, Annabelle's hormone levels were disrupted. She wanted to...
Age at interview: 22
Sex: Female
Age at diagnosis: 14
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And you were told that you have to also start putting on weight so that your fertility won’t be affected?
Yeah. Oh that was a huge factor. Because yeah obviously I haven’t had any periods for years, and my gynaecologist was just like, she did a blood test and she said, your hormones are just like really low. Like indicating you’re going through the menopause. And I was like, “Oh my gosh, this is really scary.” Because that, above all in life, it sounds really strange, but my like goal above career, above everything, I wanna have children. And I guess it just made me think, you know, I have to have children, I have to do this. And I have to put on the weight. If that’s what I have to do, I have to do it.
*The infertility caused by starvation in anorexia nervosa is usually reversible and not like the menopause. The ovaries are intact and waiting to activate once there is enough nutrition. Often fertility returns once they body is re-nourished.
People also described feeling “moody”, “irritable”, “emotional” and “crying all the time”. Many said they had no interest in sex and intimacy when they were ill.
When James was ill he completely lost his sex drive. He was taken over by eating disordered...
When James was ill he completely lost his sex drive. He was taken over by eating disordered...
Age at interview: 21
Sex: Male
Age at diagnosis: 20
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Oh when I was, at that time when I was really ill I completely lost my whole, what do you call it? Libido, absolutely completely lost that.
Nothing would register in my head. Because I wouldn’t be thinking about that at all. I wouldn’t, I lost it completely. I completely lost all sort of recognition of women and stuff like that. Honestly it was, it was quite strange thinking back at that because, but then again that is a trait of an eating disorder as well. When your body is so starved you just do not think about things like that. And at the time I just, because I was isolating myself so much I wouldn’t think about women or, in that sense at all or, you know, I would try to avoid being or talking about women or stuff like that as much as possible. And that’s what I was like when I was ill. And I was happy like that.
Teeth, hair and nails
The effects of poor nutrition often affected hair and nails. People noticed their hair getting thinner or falling out, dry nails or nails that stopped growing. Skin could be bad and “flaky”. Some people with anorexia nervosa developed “lanugo hair”, a fine hair that grows all over when the body is starving, in order to keep the underweight and undernourished body warmer.
Eva had lanugo hair on her body. She felt horrified and tried to tell herself it was normal.
Eva had lanugo hair on her body. She felt horrified and tried to tell herself it was normal.
Age at interview: 17
Sex: Female
Age at diagnosis: 14
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And I got Lanugo hair as well, all, on my body like it would be on my back, thick sort of, no thick it’s that fluffy, and your skin.
Do you remember noticing that, the first time?
I noticed it on my stomach first. And then I sort of felt like on my neck and noticed I had a lot of it there as well. But it was my Mum that pointed it out the first time. She said, “Look, you’ve got hair on you.” And I said, “What do you mean?” And she said that was a symptom. You know you’ve got Lanugo hair. And I was horrified really, I thought, “Oh God, I’m going to look like a man now, all this body hair all over me.” But at the same time I was sort of a bit like, “Ooh,” I kind of denied it at the same time because I thought, “Oh,” this, no I don’t know what it is, maybe it’s just, I don’t know.” I don’t know what I sort of told myself it was, but I kind of denied it to myself because I thought, “Oh I’m not ill enough to have that. She’s just saying that. You know it’s probably normal, lots of people probably have it.”
The acid present from persistent vomiting often caused problems to teeth; acid eroded the enamel and caused cavities (holes in the teeth). Vomiting also caused sore throats and swollen glands. People often made excuses to their dentists as they felt unable to tell them the real reason for the state of their teeth.
Elene had cuts on her knuckles from purging. It also gave her sore throat and caused damage to...
Elene had cuts on her knuckles from purging. It also gave her sore throat and caused damage to...
Age at interview: 20
Sex: Female
Age at diagnosis: 15
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I had like cuts all over my knuckles and stuff, which I don’t, well, I had like a slight scar on one but like apart from that, they’re fine, my hands, but at that point, like they were all cut up the whole time. So...
Why was that?
Like from my teeth, like rubbing my knuckles on my teeth. Like they were literally my hands were like covered in cuts the whole time. It was disgusting. So yeah.
Did you have any other sort of physical symptoms? I mean you’ve talked about being tired and cold and low energy.
It was this sore throat. Like a husky voice. I’m trying to think what else? I was tired and cold was the whole thing. I couldn’t concentrate and I couldn’t sleep and like just generally feeling really weak and stuff and not with it.
What about your teeth?
Oh my God, yeah. I forgot I completely forgot about my teeth, like my teeth look fine but like obviously, my parents are dentists and like I just have terrible like problems with my teeth in as I first had root fillings when I was, how old would I have been? Twelve, I had root fillings from like, obviously, like having worn down my teeth and I still have so many, like my teeth are really screwed up. So yeah, but my teeth always looked really white. That was the thing so you couldn’t really tell. Yeah, so I guess my teeth were also really bad as well.
But again, I don’t really understand, again I don’t think they were so terrible like it was really obvious that I had an eating disorder. So but I always get loads of holes and my brother and sister never did and, in fact, I’ve had so many root fillings now like all my molars are so, yeah.
Bones and internal organs
One of the most common and serious health risks linked to anorexia nervosa is osteoporosis. Osteoporosis is a condition where bones become weak; they develop holes, resembling a honeycomb structure. Osteoporosis can cause significant aches and pains and make the bones more likely to break. Osteopenia is a less severe form of bone weakness, which can progress to osteoporosis. Osteoporosis can affect different parts of the body; we spoke to people who had osteoporosis in their spine and hips. People had been advised to be careful not to do activities such as skiing or roller skating that could put them at a higher risk of falling and fracturing bones. It takes several months or even years for bones to completely repair after people get back to a normal weight. It can be tempting to be more active than the bones can bear. Some people had been given calcium supplements which could help reverse the effects. A few people said that the supplements had helped their initial diagnosis of osteoporosis reverse to osteopenia.
Being diagnosed with severe osteoporosis was a massive shock to Elizabeth but also an incentive...
Being diagnosed with severe osteoporosis was a massive shock to Elizabeth but also an incentive...
Age at interview: 20
Sex: Female
Age at diagnosis: 12
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I was diagnosed with quite severe osteoporosis last year, which was also a massive shock. It was also like I’ve got to do something with this because otherwise I will just break my bones and I will end up like with my back like that when I’m an old lady or even before I’m an old lady. And I, I don’t want that, I can’t afford for that to happen. I can’t afford to be in and out of a fracture clinic if I want to edit, edit the Times or be a massive like, I don’t know be successful in my life basically. I can’t afford to be in and out of hospital appointments and fracture clinics. And I never have broken anything, but if I was to I can’t afford, I just don’t have the time in my life to be in and out of hospital appointments for the rest of my days. So I can’t stay like this basically.
And so yeah I think I’ve still have osteoporosis because a year like, I had my bone scans last June and I spoke to my doctor just recently and they said, “Well you won’t see, like the bone scans won’t show a massive difference in a year. But you can build up your bone density with, to make sure that you, it’s strong enough.” ‘Cos like now is obviously the bone density building time of my life. You can build it up now before it’s too late, and that you’ll never build it up and so those holes in your spine, which I saw on the, on the bone scan (*DEXA scan) they did, which were quite shocking like kind of even shocked me, so that those holes don’t stay there forever. And so I think that was a kind of a, “Whoa, you can’t stay like this,” either.
Internal organs were sometimes affected and damaged. Some people had problems diagnosed in their liver, kidneys and heart. When very ill, some had experienced organ failure which is when an internal organ stops working properly. Rachel had been told her body had gone into “starvation mode” and when Steph was hospitalised, she’d been a few days from “complete organ failure”.
Looking back, people felt regret that the eating disorder had got so bad that it had such a big physical impact. They said that while they were ill they had no idea there could be serious long term complications, affecting things like having children or doing sport in the future.
“I was so like into the whole eating and food thing I didn’t really consider anything that else that it would do to me like. I didn’t think of my bones, I was like, “Bones? Like bones schmones, that’s not a big deal.” But I’ve got osteoporosis now.” -Annabelle
Last reviewed October 2018.