I was born and raised in the South East of the UK just outside of London in a sleepy village called Prestwood. In my university days in Southampton, I would leave for the semester and come back home a few months later to find that nothing had changed. Mum might have reorganised the entire kitchen (every year without fail) and Dad might have sprouted a few more ear hairs. But, other than that, not much seemed to happen in our neck of the woods.
When I was diagnosed with lymphoedema my life changed somewhat. I’m still heading in the same direction, only now I have new challenges and different priorities. It was my last Christmas in Southampton and the following summer I would be heading home again.
It’s safe to say that in Prestwood, lymphoedema was not the talk of the town. I had no one to chat with, not even my doctor, and so the condition soon became very isolating. I swept it under the rug and rarely brought it into conversation, unless, of course, someone spotted that one of my legs dwarfs the other.
I didn’t even wear my compression stockings as I wasn’t aware of the risks. “Hey! I’m young… there’s no way one swollen leg will keep me down” I would think, and it didn’t. Until June of 2017 where I was brought back to reality by cellulitis, but that’s a different story.
Post cellulitis, my lymphoedema network grew somewhat. I’ve met therapists and doctors, and connected with other lymphies who, just through documenting their experience of lymphoedema online, have expanded my thinking towards the condition.
However, irrespective of this global community, those from the UK with lymphoedema still lack the support they should be receiving considering the severity of the condition. We are blessed with a superb NHS which sadly, in recent years, has been suffocated by politics meaning lymphoedema does not get the attention it deserves. Primary patients will struggle to access a community who understand the condition and, upon diagnosis, there’s no standardised route of care.
For me, post diagnosis felt like being dropped off at the gates on the first day of school, not knowing where to turn, with a complimentary ‘off you go’ thrown in for good measure. I found it hard to explain to my friends, family and colleagues what lymphoedema was, why I had it, and what on earth I was going to do about it. The condition is not in the spotlight. In fact, lymphoedema is only beginning to gain exposure in the medical world due to its relationship with cancer.
It doesn’t come cheap either. Therapists, bandages, pumps, compression garments, the list goes on. There’s no way around it – either find the money, or swell. Lymphoedema has no bias – It doesn’t pick you based on your habits. Quite the opposite, it turns up unannounced as the result of trauma like a sports injury or cancer. Sometimes we inherit the condition and when it rears its ugly, complicated and swollen head it leaves the whole family guessing who carried the gene in the first place.
However, in spite of all this, the UK remains a world leader in health care. Lymphoedema might be low down on the list but compared with most of the world, the condition is manageable as support is there (you just need to dig) and our natural and social climate lends itself kindly to those suffering with it. By this I mean it’s cooler in the UK than in many countries, and as a result we have less disease. Although socially you will still face jeers and discrimination, you are likely to fare better in this part of the world where, due to an arguably more “progressive” society, there might be more understanding.
But of course, this is just one opinion of a twenty-four year sat in a hostel somewhere in Bangkok. I often find myself comparing my struggle (it’s not always a struggle mind) with other peoples. How do other Brits cope? Is the “lymphie life” too expensive, unmanageable or inaccessible? More poignantly, how do those suffering with lymphoedema cope in parts of the world where healthcare isn’t as easily accessed? It’s an important conversation to be had as there is not one country that won’t feel the effects of lymphoedema, whether that be primary or secondary.
So, if you are reading this I would love to hear your experience of lymphoedema and how it’s defined by where you live and who you are. It’s a sensitive topic, but the more we talk about it openly, the more exposure and support we can give one another.