Misconceptions about Lymphoedema

Hi Beautifuls.

Over the years I’ve stumbled across a few common thoughts about me and my condition. I thought I would do a little a post about some of the common misconceptions!

In no particular order:

1. But you’re young…

I’m so bored of people assuming Lymphoedema is only for the over 70s! Luckily for us youngsters (ok, I’m not as young anymore but I’ve had this since I was 12…) Lymphoedema does not discriminate based on age! Woohoo! I have been lucky enough to meet many sufferers of all ages. I’m lucky enough to have met some amazing friends, of all ages, via Lymphoedema and Lymphoedema groups.

2. But you’re really fit and you exercise…

Obviously due to my Lymphoedema I’m not allowed a life, I’m not allowed to create a healthy lifestyle for myself, and I’m certainly not allowed to enjoy exercise! Haha. Remember when I said that Lymphoedema doesn’t discriminate… yep, you guessed it… I was a healthy teenager who played netball and skated on a weekly basis. It still affected me. Ironically a lot of people assume exercise will have negative repercussions on Lymphoedema. However, exercise and a healthy lifestyle can aid your Lymphoedema in positive ways. My Lymphoedema is much better behaved when I lead a healthy active lifestyle compared to when I have sloth style weeks and eat my body weight in chocolate (it’s called balance).

3. But you haven’t had cancer…

I know many people who sadly developed Lymphoedema after cancer. Also, post cancer Lymphoedema is in the limelight more so than primary. I can’t imagine having a battle against cancer and winning then battling against Lymphoedema FOR THE REST OF YOUR LIFE! However, primary sufferers have a difficult journey too. Many suffer Lymphoedema through the hardest years of their lives- their teenage years. The instant “Oh, I didn’t realise you’d suffered cancer!?” makes you feel like a fraudulent sufferer, that your Lymphoedema isn’t as bad or doesn’t deserve the same recognition. Where the reality is, you’re all in the same boat, you all order the same type of garments. However the primary sufferer took longer to be diagnosed!

4. But you don’t look like you’d have a disability…

My favourite. I make a conscious effort to not have a pity party about my condition. Nobody likes a Negatron. I purposely dress up, do my hair and make up and generally try to move focus away from my disability. The reason… I have a disability, but it doesn’t have me (Thank you VP!). I try to make the most of what I can now as in the future I may not be so fortunate and may not be able to dress how I would like. Everyone seems to think that disabilities mean bad fashion choices. I’d like to see what many people consider a disabled person to look like. I ensure I wear flattering clothes. I ensure I always look put together… because that’s who I am as person. I feel better about myself when I make an effort.

5. Why aren’t you on water tablets? Can’t it be cured?

A key one at the moment. Everyone I seem to follow on social media seems to be having surgery. Good for them. Really, I am chuffed for them. I am jealous of their results. Surgery is becoming more popular and most of the newspaper featured lymphies have had really successful surgery. Meagan Barnard to name one…Her legs now look identical! 😍 Honestly, nip over to her Instagram, her legs look incredible! But with surgery comes risks. Also, it’s not a cure, it makes your Lymphoedema more controlled and more easily manageable. It requires just as much daily effort to ensure it remains improved! Most non lymphies believe that you can take water tablets and it’ll go, because… surely it’s just like when old people have swollen ankles… wrong. We don’t have excess water pooling. Our vessels don’t work thus meaning swelling. We are affected by so much more than being sat down for extended periods. We are affected by our diet, exercise choices, weather, temperature to name a few. There is no cure for my condition, only steps to manage it.

Flamingo in a flock of pigeons

Do a Lymphie a favour… think before you comment! Ask before you assume! Most of all, be thoughtful around your planning. What is easy for you, might take a few days recovery for a Lymphie.

And Lymphies remember, don’t try to blend in when you were born to stand out!

Lots of Love

L xoxox

Copyright Lauren Toner 2011-2018

2 thoughts on “Misconceptions about Lymphoedema

  1. Thank you for posting this! I think it’s time to read something that stands up and out about how I feel about how I feel with my battles with having Lymphedema! Having it since a child is hard no I don’t have cancer- and every thing I read is part of my battles and worse when I get the stares! So thank you for just making me not feel alone and know I wasn’t the only 12year old who had it!
    Ironically I was today meeting someone who Lymphedema condition has gotten bad and now into tumors so I tried to send him some tips to get help! Atleast we not alone! Again thank you


    • Thank you for your thoughtful and kind comments. I’m so glad to see other lymphies sharing the love and positivity around! It’s the sharing of advice and knowledge that makes me so hopeful for all our futures with the condition! Xx


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