On Friday, 26 February 2021, I received my diagnosis – I have Lipoedema. I had a comparatively stress free journey from hearing about Lipoedema (Lipedema in the USA) for the first time in September 2020 to getting a diagnosis from a consultant rheumatologist, just six months later. Many women (and men, who can have the condition but it is a exceptionally rare) have to battle for years to get a diagnosis and the treatment*, support and understanding that hopefully comes with it.
What is Lipoedema? According to the Royal College of General Practitioners:
“Lipoedema is an adipose tissue disorder causing bilateral symmetrical enlargement of the lower and in some cases the upper extremities in women leading to significant disproportion of the waist to hip ratio. Lipoedema is sadly rarely recognised in primary care and hence under-diagnosed. Due to lipoedema being misdiagnosed as obesity or lymphoedema, patients frequently embark on a never-ending cycle of diets and exercise regimes, resulting in further physical and psychological harm.”
”Lipoedema is an abnormal build-up of fat in your legs and sometimes arms. It can be painful and affect daily life, but there are things you can do that may help.”
What does a diagnosis mean? In practical terms, it means I can now get some compression garments on prescription from the NHS. Compression garments need to be replaced roughly every six months and are expensive to purchase, even more so if you need them custom made, so access to them on prescription is important. In addition to receiving compression, once the Covid restrictions are lifted and now I have a diagnosis, I will be able to access the services of my local Lymphoedema clinic where specialist nurses share information about skin care, exercise, massage, etc and also facilitate a support group for Lipoedema patients, their family and carers.
Having the diagnosis on my records also means that I can now ask, with confidence, for the condition to be taken into account when dealing with medical professionals. For example asking for my blood pressure to be taken at my wrist rather than my upper arm, which is extremely painful (and is something that I had always thought was normal) or consideration rather than irritation being given to the pain procedures like scans of my legs can cause.
In January 2015 I wrote a post called ‘I wish…’ where I wondered if I hadn’t been sent to a dietician at the age of six or so, if I wouldn’t have started down the path of endless diets and ended up fatter than ever. Now I know I have Lipoedema, that it is hereditary and that the little girl in the photo below that I used in that post probably already had the beginnings of it I feel…sad, I guess. Sad that she was made to feel that she was overweight when the likelihood was that her Body Mass Index (BMI) was probably squewed due to abnormal fat cells. Sad that being classed as fat meant that she felt embarrassed and excluded. Sad that this was the beginning of forty years of feeling less than.
The negative feelings that I developed over the years with regards my self image – both the physical and mental – led to an equally negative relationship with food. I would use food to cheer myself up, to celebrate, to distract myself, basically any opportunity was an excuse to eat. Later on I added alcohol in to the mix. This all added weight to my already Lipedema heavy body. Obviously I accept that I ate and drank all those extra pounds, no one held a gun to my head, but finding out that my constant weight issues have nothing to do with my lack of will power and/or my lack of character has been liberating!
Another positive outcome from getting my diagnosis is that I can share the diagnosis with my family. It is believed that Lipoedema is an inheritable condition. Looking back, I think my maternal grandmother had Lipo-Lymphoedema (where the Lipoedema fat causes restrictions in the lymph system resulting in a build up of fluid called Lymphoedema) in her legs and Lipoedema in her arms.
I also suspect that several other family members are showing early signs or already have at least stage one Lipoedema. Early diagnosis is key with Lipoedema as not only can the individual undertake practices to help delay onset, slow and hopefully halt progression of the condition, they can avoid falling into the trap of believing their weight challenges are due to their own failings.
Knowing I have Lipoedema will not reduce the pain and physical difficulties it can cause but it can help me to accept the condition is out of my hands, help me to focus on positive practices to manage the condition and help me to learn how to love my body for all it does for me in spite of its challenges.
*when I talk about treatment, I am talking about nonsurgical options. I personally don’t want to have surgery as the thought terrifies me and so I won’t cover this. There are many other people who discuss the topic of Lipoedema and Liposuction and I would suggest searching the following hashtags if you want to find out more #lipoedemaliposuction #lipedemaliposuction
June is Lipoedema Awareness Month. I will be writing and sharing more about Lipoedema over the month as well as taking part in the Talk Lipoedema Walk In My Shoes Fundraising Challenge – I have pledged to walk 66 miles!
If you’d like to sponsor me, you can do so by using the following text codes from your phone 70085
• To donate £5 text WALKINMYSHOES 5
• To donate £10 text WALKINMYSHOES 10
• To donate £20 text WALKINMYSHOES 20
or go to the Givey Donate site and find WALKINMYSHOES2021CHALLENGE