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Lymph-what-oedema

Primary & Secondary Lymphoedema Online & in the Community

Living with Lipoedema by Jo Mander

Edited by Gaynor Leech Founder of L-W-O

 

Hi I am Jo, and I have Lipoedema. I was diagnosed in Jan 2017. Lipoedema is a chronic condition that causes fat to accumulate below the waist, affecting hips, buttocks and legs that are out of proportion with the upper body. It is related to major hormone event like puberty pregnancy and the menopause. It runs in my family and I recognise that I have the same body shape as my Aunt and Grandma on my Dad’s side. I also have Lymphoedema swelling in my legs.  It is considered to be a genetic condition and thought to only affect women.  Lipoedema can skip a generation for example grandmother and granddaughter but not necessarily the mother.

Photograph Courtesy of Jo Mander

Relief of Diagnosis

When I first received my diagnosis, I was very relieved. It wasn’t my fault; I have a body that is programmed wrongly and stores fat in a very strange way. The reverse side of this was that Lipoedema was here to stay! Although intellectually I already knew that no amount of dieting or exercise makes any difference – there was always something at the back of my mind that said – you will sort this, you will just need to be more focused on getting ‘it’ right, or ’it’s my own fault because I wasn’t doing ‘it’ properly (even though I didn’t really know what ‘it’ was). Emotionally that is very difficult as I am a do’er, a problem solver, a fixer, and I can’t fix myself. 

My Daily Challenges

I now know that my huge legs and the oedema (swelling) and the reduced mobility isn’t going away and that I going to need a lot of determination to prevent it getting worse. My day to day challenges are quite varied but here’s a few things that annoy. People think I am fat (of course I am I have a genetic fat disorder!).  Body image is a big deal today. Some people and some health professionals make an immediate assumption that I am obese and that I am incapable of eating healthily, that I cannot / do not / choose not to follow instructions regarding healthy eating and exercise. Even when provided with a full explanation of what Lipoedema is (and trust me I am very happy to explain!) there is always someone who will make an inappropriate comment there is always someone who will say lose some more weight or exercise more, or just eat less and the weight will come off!

The World is not Designed

  • The world is not designed for me. Seats are too small (especially if they have arms) and usually very uncomfortable. This is a big deal, restaurants, toilets, airplanes, cinemas, buses, trains, most places really.  
  • Buying size 8 eee wide shoes that have a decent arch support, that I want to wear is challenging to say the least.  
  • Buying clothes that fit rather than I want to wear
  • Wide leg trousers that are not wide enough
  • Plus size AND tall – hello clothing manufacturers I am not the only one who needs this.
  • Pants – that’s another story all together.
  • Getting on and off the floor, I can, but it hurts my knees going down and it’s easier to have something to hold on to, to get up. This was something I have always taken for granted and is one of a number of things that I no longer find easy to do.

Tiredness

I can’t remember the last time I didn’t feel tired, I just exist with varying degrees of tiredness which varies from ok and functioning to I am sooo tired that I can’t think any more and I need a nap (bit like a mobile phone that needs its battery recharged).

NHS and Me

Although Lipoedema has been known about since the 1940’s very few Health Professionals are aware of it.  There is no cure. A very specific type of liposuction can be used to reshape the affected areas, but this is seen as cosmetic and is not available on the NHS. Compression garments are used for management, to help with the lymph flow and the swelling. I get no other support. I pay for physio and lymphatic drainage reflexology (RLD) and massage all of which I find very beneficial.

Changes I would like to see in the Lipoedema world? Early Diagnosis. Lipoedema affect approx. 1:10 women I have had this easily since my early twenties, maybe my teens, when I had large thighs which would rub and get very sore. For my physical health: If I had been informed, I would have known to keep my weight stable, to keep my leg muscles strong, my Lipoedema may not have progressed to where it is today. For my mental health: I have spent most of my life being told you are fat, you don’t do as you are told, you are not trying, it’s your own fault……. trust me it doesn’t help.

Sketch provided Courtesy of Jo Mander

Jo’s Philosophy

Life is very short and at times it can be fragile. I find what comes around goes around. If you can help someone or do a kindness, then they will do it for someone else and it comes back to you eventually. Be kind. A smile, a Hello, might be something small but may be important to the person who receives it.  Online Support groups are invaluable as there is usually someone around to help when you need it. L-W-O is always very helpful and supportive

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