Lipedema: how body and mind are connected

Lia Lindmann is the author of “Leichter leben mit Lipödem” (living more easily with lipedema) and a lipedema adviser. After many years of uncertainty she received the diagnosis of lipedema in 2012. Since then she has looked into the condition intensively and has searched for and found ways to improve her life with lipedema. Here she gives us an insight as a guest author.

In 2004, when I had just turned 21, the reality format “The Swan” was due to run in Germany for the first time. Sixteen women who suffered because of their appearance were each to undergo around 20 operations within a few months, and at the end to turn from an ugly duckling into a beautiful swan. And I, 21 years old, a student and an amateur actress, wrote an application. Change to the point of being unrecognisable: at the time that seemed desirable to me.

“Saddlebags”, “fat legs”, “unathletic”, “lazy”, in a world in which omnipresent media images suggest that you need a perfect body and long, smooth, healthy legs in order to be a popular party guest, an attractive partner in life or, quite generally, loveable and interesting, women affected by the fat metabolism disorder lipedema frequently experience rejection from others and from themselves. “I am shapeless. I have no control over my body.” That is how it was for me back then as well. Full thighs and legs are often associated by the people around us with self-inflicted inactivity, unattractiveness and even limited intelligence. At the same time the condition is played down with “well, you just have fat thighs, so what?”

Despite diet, a healthy way of life and exercise, “disproportional”: while the face may be quite narrow, the fatty tissue proliferates at other places on the body without any clear cause. Every day I speak with women who tell me: “I simply cannot accept myself.”

Women without lipedema can be affected by this psychological burden too. It should also be noted, however, that many women have not received a diagnosis so far. So anyone who recognises themselves in this text should have it clarified medically whether lipedema or lipohyperplasia might be present.

According to a survey among patients in Hannover, 84 per cent of those questioned state that they feel shame during social activities, that they exclude themselves or that they generally do not like being active. 77 per cent stated that they feel shame when eating in public or that they even avoid eating in public altogether. 62 per cent say: “I see my body as an enemy.”

Women with lipedema often sense that they are perceived with reservations. “Does she really want to go to the beach like that?”, “I would not find her attractive.”, “She could do a bit more sport.” According to the health scientists Hand, Robinson and Creel from the universities in Alabama, Mississippi and Louisiana, prejudices towards other people’s high or disproportionately distributed weight are as widespread as xenophobic prejudices, and they show themselves in the form of a disparaging attitude towards people of higher weight in social relationships, in the field of education, in employment and in health care. According to their research this leads to overweight people being pushed to the margins of society and stigmatised.

A study by Harvard University confirms this: although as a society we have dismantled prejudices in many areas, and despite the body positivity movement and plus size models, such prejudices have even increased over the past 20 years. Explicit prejudices towards body fat have fallen, it is true, but the implicit prejudices, that is to say the ones the test subjects are not aware of, rose. In short: people say that body shape has no effect on their assessment of a person, yet unconsciously they still disadvantage fuller people when it comes to choosing a partner, career advancement and even medical care.

Doctors often do not believe patients with a high body fat percentage that they are doing enough for their health, or they believe they are not sticking to medical instructions. They also frequently assume that it is self-inflicted, therefore offer fewer treatment options and do not look for other possible causes of the complaints. In this way conditions related to body fat often remain undiagnosed and untreated. Dr Rebecca Puhl, clinical psychologist and director of the Rudd Center for Food Policy and Obesity, and Judy Swift, professor of eating behaviour at the University of Nottingham, are among those who warn of these effects. With lipedema it usually takes more than ten years until a diagnosis is made. Even today many of those affected receive no diagnosis at all.

However enlightened and attentive many of us may be: the way society thinks, coupling body fat with negativity, gnaws at self-confidence and can become so deeply internalised that we also speak to ourselves in nothing but a critical, reproachful tone. Quite a few of those affected report deep sadness or intense self-hatred which weighs heavily on them when they think about their body or look at a photo. Not infrequently this self-hatred also extends to other areas of life: in their relationships and their working lives those affected try to give more and more, and they exhaust themselves. Eating disorders occur frequently in connection with lipedema, because eating is either used in an over-controlled and self-mortifying way in order to subdue one’s own body, or it is consumed to excess in the form of giving up on oneself, self-punishment or comfort for the soul. An investigation in a specialist practice for lipedema in Bavaria found that 74 per cent of the patients there additionally suffered from an eating disorder.

According to the Australian psychologist Dorothy Rowe, it is easy to move from sadness into depression: “To turn natural sadness into depression you only need to change one component: holding yourself responsible for the catastrophe that has happened to you.” When we are ill we ask ourselves “why me?” and often arrive only at self-condemning accusations of guilt, which then stay with us. We make ourselves responsible for our condition and in this way make it more likely that sadness turns into depression.

My psychotherapist at a lymph clinic explained to me that the extended biopsychosocial model underlies the pain and all these processes, that body and soul are inseparable. If I am constantly reminded of my condition in a negative way, by recurring refusals from the health insurers, by the struggle, by not being understood and by discrimination from others, then I also feel the pain more strongly. That is not because I am imagining it or talking myself into it, but because stress, anger and depression release a different cocktail of hormones and messenger substances, one which cannot regulate pain as well as the combinations of an inwardly calm, mentally healthy body.

According to a study by Dr Josef Stutz, 80 per cent of his patients rate their physical pain at more than 5 pain points on a scale from 0 (no pain) to 10 (unbearable). With emotional pain the results are even more dramatic: 72 per cent of the affected women rate their emotional pain at the highest values of 8 to 10. According to Dr Stutz, the downward spiral they experience, made up of self-rejection, reproaches, bullying, difficulties in finding a partner and with sexuality as well as medical hopelessness and difficulties with doctors and health insurers, leads in eight per cent of his patients to suicide or suicide attempts.

It is important to recognise: anyone who has lipedema often has, in the truest sense of the word, a heavy package to carry. Seeking help is not only no disgrace, it should be seen without inhibition as part of the therapy. Yet many lipedema patients receive no adequate psychotherapeutic help. And those affected often do not dare to ask for it. Feelings of guilt and shame keep them from letting themselves be helped. “I do not need psychotherapy”, they think, “I just have to pull myself together.” It is true that some rehabilitation clinics offer individual hours of psychotherapy as a supplement to decongestion therapy, and some psychotherapists specialise in fields that border on lipedema: a disturbed body image, eating disorders, inferiority complexes, difficulties with sexuality and in a partnership, social isolation and dysthymia. Overall, though, there are too few therapy places and the thresholds are too high.

The typical hormonal situation of lipedema unfortunately also encourages depressive moods and anxiety disorders. An underactive thyroid frequently occurs together with lipedema, and in relation to progesterone the oestrogen in the body is more active. Stress, which likewise shifts the hormone balance, is a constant companion for many.

Dr Joanna Dudek from the University of Social Sciences and Humanities in Warsaw specialises in psychotherapy for lipedema, and I interviewed her for “Leichter leben mit Lipödem”. According to her research, quality of life and satisfaction with life among those affected are positively influenced above all by acceptance and the ability to act. These can be trained in psychotherapy or in specialised coaching. Social connectedness with others also plays a large role and can be taught particularly well in functional analytic psychotherapy.

Body-oriented therapeutic methods contain elements of mindfulness for the body, exercises for the body, physical touch and reflection. The basic assumption is that habitual sensations and convictions, our world view about ourselves and others so to speak, are stored physically and also have to be released physically. The idea “I am not loveable”, for example, can store itself in a body posture and cannot be released with the mind as long as the body holds on to it.

The lipedema advice service that I have been offering for three years combines aspects of these methods. The mind gets plenty of room. “To be understood at last!” For many that is an enormous relief.

If you are not yet ready to accept advice or psychotherapy, there are some things you can try on your own. But if they seem impossible to you, then find the courage to look for help.

Anyone who breathes calmly and deeply cannot release nearly as many stress hormones as someone who breathes shallowly and quickly. It is practically impossible. For us women with lipedema, breathing has a further purpose. In our body it is about achieving permeability. So that the lymph can flow. So that we can let go of what weighs on us. When we breathe deeply, we clear the way for permeability. In the upper body at least we are then no longer tense and congested. If you do the reverse test, you notice it very clearly: hold your breath. Does it not feel as though practically everything in the body is now standing still?