Explanation

[Keeping]

Hi guys, what quick explanation do you give in conversation when you say you have lymphedema and you get the inevitable question ‘what’s that?’ Nothing in depth, just what’s your most successful brief synopsis. Try as I might, I can never make the average person get it. Mostly get ‘can’t ya take water tablets’ or ‘can’t they draw it out with a needle’

[Lynora]

My lymphatic system has packed up which means I have a swollen (arm/leg/anyotherbodypart!) which can’t be helped with water pills or a diet. I have learnt how to manage it. How’re you doing?....

[TeresaMay]

I say it is just the plumbing system failing. And as to remedies when friends, and family, say can't you wait for an operation? I say amputation is not something to look forward to. That stops them and they don't ask any more.

[CCT67]

I use the opportunity not only to explain but to educate as succinctly as possible because most people are clueless about the lymphatic system and I want to change that. I often say something along these lines:

I have Lymphoedema, it occurs from when our lymphatic system is broken and unrepairable - either from genetic mutation or from trauma ie chemotherapy or surgery etc. Our lymphatics are responsible for filtering and sterilising our blood (from cellular debris, toxins, molecular waste) and sending it back to the heart. Broken lymphatics result in huge clogs in the system causing lymph fluid build up in our tissues (like a heavy wet sponge) and permanent swelling. I wear medical compression garments, they support the swollen tissues and promote lymph flow towards towards the heart

[lovesradio]

I am a teacher so if my pupils ask about my arm sleeve I just say that my left arm needs a bit of extra support. If adults, I say much the same as Lynora and Teresa May.

[GabbiD]

I rarely tell anyone. Since mine is my leg, my sock isnt hugely noticeable. But if I do mention it, I usually just say I have swelling in my left leg. The term is just not well known.

[Hidden]

15 years since my secondary Lymphoedema kicked in and yes it's hard to explain.

Even harder when it doesn't respond to conventional treatments and almost impossible when I need to explain about my pre existing condition; Lipoedema and that's just to medical staff who invariably ask why I don't wear a sleeve.

I'm with Cat; we need to raise people's awareness of the wretched condition.

I now give interested parties an LSN leaflet and, at medical appointments I give away the cards for health professionals about the learning modules.

As a member of my GP surgery patient group I am ideally placed to talk to the trainee GPs and encourage them to undertake the leaning modules, I include the Lipoedema learning module as I suffer from both.

I get first class care from my GP surgery as a consequence.

To be honest the size of my arm is HUGE so it's bound to provoke curiosity from all that see it, and then me.

I have found the response from medics to be very good.

When I was in hospital a few years ago the unit manager was very responsive to all the literature I gave her. Subsequently all trainee staff were told to undergo the training modules so they could provide better care to " her patient ".

Small steps but it's the only way I can cope with the horrid condition.

Wendy

[Carolpa]

I just say " my arm swells badly if i dont wear compression" that usually does it but people who are genuinely interested will question and i am happy to inform