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My Experience of Living with Lipoedema by Karen Williams

Updated: Aug 7, 2023

Lipoedema Awareness Month

Quote on yellow background "Many with Lipoedema have had to endure taunting, smart remarks, judgements and assumptions from those around them before a diagnosis.  This adds to the already vulnerable, emotinal and uncertain situation, all as a result of a lack of awareness and compassion."
Lipoedema Awareness Month

Living with Lipoedema is hard. Managing the condition and knowing there is no cure is a hard pill to swallow. Especially if you have received a late diagnosis like myself, you will have spent a lifetime dieting and exercising, and you would have been bullied about your weight or the size of your legs.


Thunder thighs and tree trunk legs were a favourite when I was in school. You will have been made to feel like a liar with regard to what you are eating and the exercise you are doing.


Society is not a kind place for larger women. It can have a profound impact on one’s mental health and wellbeing, knowing people are judging you as being fat, lazy, a burden on the health system, and a burden on society.


However, this is not our fault!!


Women with lipoedema find it difficult to get clothes and shoes that fit. Chairs with arms are a nightmare. Standard-sized toilet cubicles are impossible. Turnstiles and gateways can be too narrow.


Many Women with lipoedema have reduced mobility, so distance and terrain can have a huge impact.


Familiarisation Videos was founded by me (and Roxy), someone who lives with both Lipoedema and Lymphoedema. I have very limited mobility. I can walk very short distances with crutches but usually use a wheelchair. It impacts my mental health, adding to my anxiety and exasperating the agoraphobia I live with.


I know all to well the importance of the information we provide in our Familiarisation Videos. Knowing how far the entrance is from the car park, what the terrain is like, what seating or rest stops are available, what the accessible toilets look like, if there are steps I need to negotiate, what the fire exits are like, are they accessible?


These things are important to me and many others. Knowing this in advance allows me to decide if it is something I can manage to overcome or not. Would I manage on crutches or do I need a wheelchair? My wheelchair is wider than a standard wheelchair, so will it fit through the doorways, or will I need crutches as well to negotiate that?


This is just my perspective and what helps me. This is not taking into consideration the needs of my family who live with other health issues, including Autism. We try to ensure we cover all bases when showing as much information as possible in our familiarisation videos.


We want people to live their best lives, and this is just a small thing we can do to help.


Some facts about Lipoedema and Lymphoedema...


  • Lipoedema affects around 11% of women. It is a cruel condition that is often misdiagnosed as obesity.


  • Lipoedema usually affects the lower body and/or arms. It is characterised as abnormal fat that has grown disproportionally to the rest of the body.


  • Unlike normal fat cells, lipoedema is resistant to diet and exercise.


  • Lipoedema is usually triggered by a hormonal event such as puberty, pregnancy or menopause.


  • People with lipoedema will likely bruise more easily and experience pain, especially when areas impacted by lipoedema are knocked or scraped.


  • Many women describe their legs as large, heavy, and column or ‘tree trunk’ like.


  • Early diagnosis helps to manage the condition, prevent or slow down the progression to further stages, and avoid developing other conditions such as lymphoedema, varicose veins, osteoarthritis, knee pain, psychological problems and obesity.


  • Later stages of lipoedema can trigger lymphoedema, which is an accumulation of fluid due to a breakdown in the lymphatic system.


  • Lipoedema and lymphoedema are known as lipolymphoedema.


  • Lipoedema and lymphoedema can be managed with compression therapy, lymphatic drainage massage, rebounding exercise, gentle exercise and managing weight to prevent obesity will help relieve any additional pressure.


To find out more about Lipoedema and Lymphoedema, and to get help and support you can visit https://www.lipedema.org/




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