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Bella talks about living with Primary LE in “Let’s Talk Lymphoedema”

Bella talks about living with Primary LE in “Let’s Talk Lymphoedema”

A guest blog post by Bella Roberts. Bella is 15 years old and is featured in the soon-to-be released book Let's Talk Lymphoedema: The Essential Guide to Everything You Need to Know by Gemma Levine and Peter Mortimer to be published by Elliott & Thompson in May 2017.

Hello, my name is Bella Roberts and I have primary lymphedema. Now I could just spend this whole page talking about what it is and how it is caused but that is just boring! I am going to talk about the real lymphedema, the fun, the humorous and the sad stories of living with lymphedema everyday.

Let's start with the staring. Staring is a big issue with my life, everywhere I go it's seems like everyone wants to have a peak and just stare at me. Everyone tells me to just ignore it but how can you when it happens everyday, I hate it! Whenever someone stares I really have the urge to just go up to them and either punch them in the face or shout at them but any of those two options could land me in a heap of trouble so I try to refrain from my urges. One of the best experiences I have had with staring is when chubby people stare at me because if you know or understand what lymphedema is, it's a bit ironic isn't it?

My next issue is physical exercise, now that's a struggle I deal with everyday. To start with I stopped PE in year 9 because it was getting to the point where I couldn't handle it anymore. I find physical exercise hard because of all the extra fluid I have to carry on top of my normal weight; to put it into more simple words it's like carrying fifty bricks on my legs, arms and all around my body. Missing PE isn't all too bad because instead I get to go to the library and watch don't tell the bride. However I am not all a lazy human because I make up for missing PE by doing everyday exercises, that people find easy. For example walking to school.

Next I am going to talk about the things that upset me. As I get ill quite a lot from infections I miss fun and important days at school or at home. For example in year 9 I got an infection in my Hickman line which meant I had to be hospitalised. I was in hospital for two weeks, in those two weeks I missed my little sisters first fashion show in her new secondary school, house events, fun lessons and just the latest gossip at school. Despite all these annoying things when I got out it was Easter holidays so it wasn't all bad.

The next problem is clothes. Now that is a huge issue because I am swollen but also really short. So the clothes I have are either too tight or too long, not to forget shoes, I have about one pair a year that fit my feet after that is another quest "to the galaxy of h & m to find the shoe that will fit cinderbella!"  And if they don't look "cool" tough, I have to bear with because all those nikes just won't budge into my ginormous feet! I wear these shoes for school, PE, going out, everything! So as you probably guess they sometimes don't even last a whole year. One day I am going to create a pair of shoes that can change shape to fit anyones feet, but the way technology is going, they have probably already invented it.

To conclude: having lymphedema isn't the best thing but it isn't the worst. It has it's ups and downs, happy and sad moments but it's all ok in the end, I wouldn't change who I am for the world but I would like more people to be aware of lymphedema because it is not a very well known condition. My name is Bella Roberts and this is the real lymphedema.

Bella's story is featured in the soon-to-be released book Let's Talk Lymphoedema: The Essential Guide to Everything You Need to Know by Gemma Levine and Peter Mortimer.