‘Because I was so sick, I felt that I was completely exhausted. I think that many people with lipoedema fight hard. No one knows, and you are expected to manage, even if you feel that something in your body is not working and you can’t explain why. You fight so hard for so long, so you finally break down, and I did.’² This description is a daily experience for someone who lives with lipoedema. People with lipoedema not only deal with the physical symptoms of the disease, but also go through great mental distress due to stigmatisation, low self-esteem, and delayed diagnosis. These eventually can lead to depression and anxiety, which makes psychological support crucial for people who live with this condition.

What is Lipoedema?

Lipoedema is an abnormal, symmetrical build-up of fat on the lower part of the body, usually on the butt, thighs, and calves. Visually, it creates an uneven distribution of fat around the hip and leg area, although it sometimes affects the arms as well. Its symptoms can include pain, a feeling of heaviness, swelling, easily bruising skin, and unusual fatigue. It is a progressive disease, which can take years to reach more severe stages. The various types of lipoedema are defined based on the location of the accumulated fat.

It almost exclusively occurs in people assigned female at birth (AFAB), and it is suggested that around 10% suffer from this disease.¹ Despite the large number of patients, the exact causes of lipoedema remain hidden. It can be inherited, and it is known that lifetime periods with hormonal changes, like puberty, pregnancy, and menopause, pose a higher risk.

The lack of knowledge, accurate diagnostic tools, and unfamiliarity with the disease make the early recognition of lipoedema difficult. Average people, even practitioners, often confuse it with obesity or lymphedema. Besides the similar symptoms, half of the lipoedema patients have a body mass index (BMI) over 35, and lipoedema can lead to lymphedema in a later phase, which worsens the chance of receiving an accurate diagnosis.

Psychological Burden and Distress

Chronic pain and physical limitations

‘It is painful, every step I take is so painful. When I sit down, it is painful, it is so hard.’²

Lipoedema is often accompanied by physical problems, such as difficulty walking, joint issues, flat feet, and mild to severe pain that can be constant or felt only with pressure. Such easy tasks, as dressing or walking up stairs, can turn into nightmares and a source of torture.³

This ache is caused by the heavy internal pressure on the nerves and blood vessels, and patients often describe the feeling as an explosion from within.² People with this disease suffer from a decrease in their quality of life, often unable to fulfil work-related duties, finish household chores, or be present as a whole member of a family.^2,3,4,5

Body image and self-esteem issues

‘And then I come to the gym, and there are mirrors everywhere, from top to bottom[.] And in that moment, I feel disgusted by myself. So incredibly ugly. Gross.’⁶

People suffering from lipoedema often face social judgment about their appearance and physical condition: staring, whispering, and inappropriate comments. Besides the average attitude, the body image can be further destroyed by the beauty ideal represented in social media, and patients can feel that their legs do not meet the required standards. On top of these, they experience difficulty buying clothes and feel embarrassed to show their body openly.⁷

They often lack lust or feel unattractive, which affects their sexual life; although they want to engage in sexual activity, they are often incapable of doing so. This is paired with the impression that their significant others also find them unattractive, making it even worse.²

Social stigma

‘The worst thing is that people believe that I sit at home and just eat like a maniac, and that I’m a lazy person that doesn’t do anything.’²

Lipoedema is often misdiagnosed as obesity⁸ and promoted as if weight loss helps, although studies show that this suggestion has only a mild effect on this condition.⁹ People AFAB often face stigmatisation as obese, get fat-shamed (mockery or criticism about weights and sizes), and are judged by others as being lazy and lacking character.^2,6

This stigmatisation causes disbelief, and patients’ explanations about their condition and body shape often fall on deaf ears. The misunderstanding of this illness results in patients eventually avoiding social activities.^6,8 

Delayed diagnosis

‘I found a picture of a woman who looked precisely like me, and she had lipoedema. I decided to show the picture to my doctor. He, however, believed that this was just a way to put the blame on someone else.’²

Approximately 70% of people AFAB experience lipoedema in their 30s, but only a small few of them (1.6%) get diagnosed in this age range.³ Their attempts to find out the reasons for the symptoms usually remain unsuccessful for years or even decades. They get disappointed in the healthcare system, while the delayed recognition leads to more severe symptoms. Lipoedema patients often undergo several examinations, but since they do not show any illness, they only receive advice on weight loss and prescriptions to visit dietitians. For some, the solution comes from self-education and information search, but even in this case, they might encounter scepticism. It’s important to mention that not everyone’s experience is negative, but it depends on the knowledge and acceptance of the healthcare professionals.²

Negative emotional responses: depression and anxiety

‘Mentally, my size has always been a barrier. You’re always perceived as different.’⁶

Eventually, the emotional and physical distress can trigger depression^10,11,12 and anxiety.¹³ Many people AFAB with lipoedema suffer from this strong emotional distress that makes their daily life even harder. However, psychological support can improve their quality of life and provide some relief for the patients.

Psychological Support in Lipoedema

Acceptance and commitment therapy

Acceptance and commitment therapy (ACT) is a psychotherapy that focuses on accepting someone’s negative thoughts and feelings, and promoting behaviours that align with the person’s values. It is a different approach from the well-known cognitive behaviour therapy that emphasises the elimination of negative emotions and mindset. ACT is mainly beneficial for teenagers and adults because it requires abstract thinking, like familiarising with someone’s values. It is commonly used in depression, anxiety, PTSD, and addictions, but there are promising results suggesting it can help people AFAB with lipoedema.¹⁴

This therapy follows six core processes:

• Acceptance: embracing thoughts and feelings as they are
• Cognitive defusion: detaching from negativity
• Being present: less planning for the future and more staying in the moment
• Self-as-context: viewing someone’s self as a whole person, not merely thoughts and experiences
• Values: clarifying what is important for someone
• Committed action: taking actions driven by the defined values

If someone chooses ACT as a solution, the journey can take several weeks to months, but with professional guidance, they can settle their feelings and improve their quality of life. 

Functional analytic psychotherapy

Regular meetings with a psychologist are useful to decrease the developed distress due to lipoedema.² Another useful approach can be functional analytic psychotherapy.¹⁴ This therapy uses the close relationship between therapist and client to bring about a change in the patient’s behaviour. During the sessions, the psychologist pays attention to involuntary facial expressions or negative words, gently calls attention to them, and tries to reinforce more adaptive behaviour. Functional analytical psychotherapy can help patients to restore the connection with society and also ease their depression and anxiety symptoms.¹⁴

Support groups and networks

Multiple stories prove the importance of support groups in lipoedema.^2,15 Patients often feel alone and isolated from society, but getting in touch with others with the same condition gives them relief. In these associations and groups, they can feel understood and believed. Simply being a member of these groups can reduce their stress level, bring them happiness, and motivate them to cope with their illness. They can also share their stories and experiences, and can receive others’ opinions on how to deal with their condition. However,  it is worth noting that sometimes social media platforms cause worse mental health conditions due to misinformation.²

Family and friend support

It is important to emphasise the role of family members and friends for patients with lipoedema. People AFAB in stable romantic relationships felt safer and were able to manage their conditions more easily.¹⁵ The support they received can be emotional (like feeling understood or cared for), instrumental (like someone helps with the daily tasks or chores), or informational (like advice or guidance). This strong social support leads to a better social life, emotional stability, and less fatigue.⁸ Support can come from the family, friends, or significant others (partner, close companion, or confidant) who also helped to reduce the effect of social stigmatisation. Thus, it is also crucial to educate the patients’ social circle on how they can help reduce the distress caused by lipoedema. 

Summary

Lipoedema, the built-up fat around the leg and hip areas, causes great distress for patients. Reduced and painful movement, body image and self-esteem problems, social stigmatisation, and delayed diagnosis make the quality of life sometimes unbearable. Supportive friends and family can ease these burdens, and in their search for more help, joining patient groups gives them relief. Professional guidance, such as acceptance and commitment therapy or functional analytic psychotherapy, can further improve their everyday lives. Involving not only physicians but therapists in the treatment is essential to help lipoedema patients and make their lives easier.