Life with Lymphoedema

When teacher Lauren Toner was diagnosed with Lymphoedema, she felt depressed and alone. However, thanks to social media and her brilliant lifestyle blog ‘Lymph Fashion’, she has come out the other side and is raising some much-needed awareness. Here, she shares how she has adapted to a life with Lymphoedema.


LYMPHOEDEMA – EXPLAINED

“It is swelling caused by excess fluid in the lymph vessels due to them being blocked or damaged and therefore unable to move the fluid through the body. There are 2 main types – Primary (genetic) and Secondary (caused by traumas like insect bites and cancer treatments). The vessels become brittle, skin becomes highly sensitive and fragile and there is also an increased chance of infections if not cared for.”


The early days

“I had no warning signs but randomly developed a lump on my inner thigh which my GP told me was fluid retention. Months later, my ankle started swelling and eventually I was diagnosed with Primary Lymphoedema. I spent most of my late teens in denial, refusing to wear the ugly compression garments and I suffered with depression through my A Levels and university.

My day-to-day

“Lymphoedema is difficult but I now know moaning won’t change anything so I suck it up and get on with it. I’m always trying to adapt – I’ve just changed my beloved Audi TT convertible because I was in pain driving. I have to keep my weight consistent as becoming overweight would affect my condition and I need to think carefully about the activities I take part in; running is an absolute no for me. Alcohol affects my Lymphoedema too and eating junk food for extended periods of time causes my leg to ache.”

My beauty hero

“I have to use compression garments to encourage the movement of lymphatic fluid flow but they are super tight and leave my skin dry. I use Legology Air Lite religiously – it dries quickly, doesn’t itch or damage my garments, plus it relieves my constant aches and restlessness. I use it after a bath or shower, post-gym when my muscles are aching. I always keep a small refillable pot in my wash bag.”

Application ritual

“I use a light touch, moving in upward strokes from knee to groin, then ankle to knee to groin, then toes to ankle to knee to groin. This encourages removal of fluid at the top of the limb for the fluid further down to have somewhere to move from and towards.”

Social media therapy

“The best thing that I ever did was join a Facebook support group. These friends are an absolute lifeline as they can relate to exactly how I’m feeling. I was diagnosed during a time with no social media and only Google images to focus on, thus making me feel even more alone. Even though we have to adapt our lives, we can still be true to ourselves and what we want from life. In essence, we have Lymphoedema, it doesn’t have us.”

The Lymph Fashion blog

“It started as part of a 10-person project to raise awareness but I enjoyed venting about the daily frustrations so eventually changed the name and allowed it to morph organically into what it is today.

I try to be as varied as possible; my travel posts focus on preparation and how to care for yourself while you’re away and my fashion posts tend to centre around how to easily imitate and adapt catwalk trends, so looking more at a trend or colour rather than a key item of clothing.

For beauty, I look for simple make up trends rather than ones that take an hour to create as we don’t have the luxury of time in the mornings.”

Shopping with Lymphoedema

“It’s not always easy. Finding jeans and trousers to fit is a nightmare – they’re usually very snug on one limb and loose on the other, or you have to buy two sizes bigger then take them to a tailor to have the waistband altered and one leg taken in to match the other.

If I’m shoe shopping, I’ll only try shoes on at the end of the day when my foot is at its worst. The main thing I ask myself when trying clothes on is “how much does this stretch?”, as our limbs vary on a daily basis and “will this cling to my compression garment?”

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Legology Air Lite £62 is Lauren’s go-to moisturiser for relieving aches and pains, and to tackle dryness.

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