Let’s talk about Lymphoedema

What the title of this post says is exactly what has been happening more and more in our house lately – talking about Lymphoedema. Obviously it has always been in the conversation on a daily basis over the years as it plays such a huge part of our everyday lives – but the difference now is that Lucia initiates a lot of these conversations.

As Lucia was born with this condition and we have been carrying out her treatment since she was just a few months old, she only knows life with Lymphoedema in it. Her everyday includes therapy, compression, skin care, elevation, exercise and vigilance when she is outside playing – all of which is completely normal to her.

We have also spent quite a bit of time with Max over the years explaining the condition to him, how it affects Lucia, reading ‘The Big Book of Lymphoedema’ to him and involving him in her treatment so he has some understanding of the condition and to ensure he feels included in everything.

Explaining Lymphoedema

We have always talked to Lucia about her Lymphoedema and she has been able to say ‘I have Lymphoedema’ since she was just two years old. (I know many adults who struggle with the word!) We have always explained it to her in as simple terms as possible to try and build an understanding with her – and that is tough because I find it hard to explain to adults never mind simplifying it for the children.

But over the last few months she has been bringing it up more and more of her own accord. We can see her little brain ticking over as she tries to understand the condition that she has, trying to figure out what is going on inside her little body, why she has to wear tights all the time (which is tough on warm, sunny days) – and how we answer her now is so important for her mindset and for her confidence going forward. To be honest, I do find it pretty hard as I am always worried that I won’t explain things properly, in a way for her to understand and in a positive way that doesn’t make her feel like this is something negative, but instead makes her feel determined that she can still do anything she wants to do. Then I overthink about what I have said to her and wonder could I have said it better, was my wording ok, should I have said this instead…

Positive and negative

It’s also so important to remember that how we see her condition as adults, isn’t how Lucia sees it. We know it is a rotten condition to have. It can make us sad and scared because it is chronic, incurable and progressive. We worry when swelling fluctuates. We fear infection. We wish she didn’t have to wear compression tights everyday. I could list one million other negative things but I won’t as we do not dwell on these factors often. Instead, we focus on the positive for Lucia as everyday we tell her she can do anything she wants.

She doesn’t feel any of the above. She doesn’t see her Lymphoedema as something negative at all. In fact, in her own words she ‘likes’ her Lymphoedema because it is ‘part of me’. So when she says things like this I feel like we must be doing an ok job with things.

But anyway, I thought I would note down some snippets of the conversations we have been having over the last little while to show how her little brain has been working and how we have been trying to explain things to her.

Fluid

Lucia: What is the fluid?

Me: The fluid is like water and it gets stuck in your leg because the little tubes don’t work properly to move it around your body.

Lucia: So it’s like there is a bar across my leg and when the water tries to get out it bangs off it and can’t move?

Me: Yes, so we use the machine to try and help some of it escape. Then it sneaks out and shouts hooray! But then it comes back, falls down and gets stuck again and then we have to help it escape again. That’s why we do it everyday.

Lucia: And that’s why we do elevation too. I don’t think any of my friends would know what elevation is but I do! What colour is it – is it white?

Me: No, it is clear like water.

Lucia: Wow.

Me: And how else do you get this fluid to escape?

Lucia: By dancing! And walking and running and bouncing on my mini-tramploine.

I like my Lymphoedema

Lucia: Will my lymphoedema go away when I grow up?

Me: We don’t know sweetheart. Maybe or maybe not.

Lucia: What? I don’t want it to go away – I like it!

Me: What do you like about it?

Lucia: I’m not sure.

Me: Do you like wearing your tights?

Lucia: Not really

Me: Do you like your machine?

Lucia: Yes I love it.

Me: Do you like getting your moisturising cream on?

Lucia: Yes, it feels nice. And I like bouncing on my mini trampoline.

Squishy foot

Lucia: Mummy, my left foot is all skinny and bony and my right foot is all squishy and soft. I love it! (As she sits poking her foot!)

Me: That’s right, and do you know why?

Lucia: Because that’s my lymphoedema foot.

Me: Yes, that’s right. And that’s why it is sometimes harder to get your shoe on this wee foot and it can be a tight squeeze.

Lucia: Oh yes! I know that! And sometimes it’s not very comfy. I can see this foot and leg are bigger than my other one too.

Me: That’s right sweetheart – they are a wee bit bigger but both legs are super strong and let you do anything you want.

Lucia: Like dancing!

School

At school her friends seem to be also showing more of an interest (probably due to the warm, sunny days) and asking her why does she have to wear tights all the time. Her answer is: ‘Because I have Lymphoedema and they help me.’ Simple!

Negativity

Lucia has only had one negative comment so far and it was from a girl in school who told her she didn’t like her tights. My heart felt like it smashed into a thousand pieces as I asked her what did you say. And her response was epic

Lucia: I said to her, why do you not like my compression tights? They aren’t just tights. They are a part of me. They help me. It’s like they are one of my body parts, I need them.

Me: Good girl! That’s exactly right! And how did this make you feel?

Lucia: I felt cross!

Lucia could not have handled this situation any better. Her response was amazing and the pride I felt as she told me her side of the conversation was unreal. Right now her lymphoedema is very much a part of her – part of her identity and a part she is protective of. I know this feeling might not last as she gets older but it is a good foundation and very much the way we have been trying to teach her about this condition. Our strong girl.

Protective big brother

Max also heard this particular conversation and said the girl wasn’t very nice who said it, but he was so proud of Lucia’s reaction. He is a very protective big brother and we know, even though he is only 9, that he understands a lot about her condition and will always be there for her.

As I said earlier on in the post, it has always been hugely important that Max is part of Lucia’s ‘Lymphoedema Life’ – whether that means being with us watching Netflix while we do her treatment, attending therapist appointments with us or getting cushions to elevate Lucia’s legs, he is just as much a part of everything as us. Although they have times where they drive each other (and me!) mad by fighting, they are very close and we hope always will be as they grow up together.

So we will keep talking about Lymphoedema as much as we can. And enjoying our summer too!!