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Emotional/psychological support For Those Living With Lipoedema

Lipoedema is a life-long condition, and like anyone with chronic disease, women who have Lipoedema are likely to face not just physical but psychological and social challenges.

 

Lack of knowledge about lipoedema and the fact the condition is often overlooked and mistaken for obesity means many women experience self-doubt and feel stigmatised. After the initial relief of receiving a diagnosis and discovering lipoedema, many feel despair when they hear there is currently no cure. They may also experience anger over previous experiences of being dismissed by medical professionals as ‘just fat’, possibly for decades, instead of having their legitimate complaints recognised. 

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Talking through feelings and accessing emotional support can be a great help at this stage. Whenever possible, the availability of appropriate support from healthcare professionals with knowledge of lipoedema and its management can be of great benefit. Referral to psychological and therapeutic services can be helpful.

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Depression and anxiety can compromise the ability to self-manage Lipoedema and compound feelings of helplessness and hopelessness that may already have arisen because of an inability to lose weight from the affected parts of the body and the confusion at being such a different shape to friends or family.

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It is important to discuss any feelings of anxiety or depression with a GP in the first instance and investigate which treatment options can be considered, such as medication, or if necessary a referral. This may be to a clinical psychologist, or individual/group counselling, cognitive behaviour therapy (CBT) or mindfulness techniques.

How Cognitive Behaviour Therapy (CBT) can help Women with Lipoedema

Both the NHS Choices website and the National Institute for Health and Care Excellence (NICE) recommend Cognitive Behavioural Therapy (CBT) as useful for people with long-term conditions such as lipoedema.


In contrast to many forms of psychotherapy, CBT is a solution-focused approach to treatment. The goal of CBT is to help people get better and stay better. The therapist and the client work together as a team to identify and solve problems. Therapists help clients overcome their difficulties by changing their thinking, behaviour, and emotional responses.


CBT interventions will be adapted to take account of the legitimate and specific issues related to lipoedema. The main focus is likely to be on:


Support – communicating this is a long-term condition and not the fault of the individual
 

Empathy – recognising the negativity women with lipoedema experience

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Intellect – working through the grief to accept the reality and implications of the diagnosis
 

Psychology- what a diagnosis of lipoedema means to the individual, how it impacts their view of the past, present and future, themselves, other people, and the world

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Behaviour – defining what actions are necessary to construct new ways of living, to reorganise behaviour and lifestyle


Assertiveness - being able to access adequate treatment, report problems, educate oneself about the condition, and network with others to share experiences and receive support


Social issues – adjusting to a reorganisation of family and social structure


Practical steps – developing strategies for managing health, for example introducing hydrotherapy or water aerobics into weekly routines. Referral to the Occupational Therapist to assess for any aids or equipment that may be helpful in carrying out daily activities.


Physiological support – teaching relaxation and stress-management techniques.


Facilitation - introducing group therapy and support groups.

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The Socratic dialogue method of guided discovery is used in CBT. This is a non-judgmental way to help people learn from their own experiences, focus on the most relevant information, shift from set ideas to more abstract exploration, and apply new knowledge and evidence to re-evaluate prior conclusions or develop a new idea.

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CBT can help change patient’s attitudes towards lipoedema as individuals and promote productive, positive ways to learn to cope and live well with this long-term condition.​

If living with Lipoedema has had a significant impact on your mental health, the below resources are here to help.

  1. IAPT services are largely available through self-referral (www.nhs.uk/service-search/other-services/Psychological%20therapies%20(IAPT)/LocationSearch/10008) 

  2. Asking a GP for a referral to local community mental health services (CMHT)

  3. Seeking help privately (www.psychotherapy.org.uk) Many therapists will charge according to income.

  4. Seeking help from people like ‘the samaritans’ and ‘mind’ if help is needed immediately.

  5. Samaritans- Call 116 123, email jo@samaritans.org or visit their website https://www.samaritans.org

  6. MIND- https://www.mind.org.uk

  7. The BAD website www.skinsupport.org.uk can signpost people to the right place

  8. VTCT – ADD INFO AND LINK

Why not consider becoming a member of lipoedema UK and benefit from some of the additional benefits such as a GP/Clinician information pack, regular updates and a membership to our weekly online Health and Wellbeing community sessions.

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