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Primary, Secondary & Paediatric Lymphoedema Online & in the Community

Terminology

Author: Gaynor Leech Founder of L-W-O Community

 

One of the best parts of running a support group are the debates we have either from the questions that are asked or information that is posted.  When we discuss the terminology we use, you can guarantee it will upset some members while other members will find the terminology empowering.  Why do these posts regularly appear?

Terminology - the technical or special terms used in business, art, science, or special subject and in our lymphoedema community often the subject of discussion, heated debates and open to interpretation or meaning which is different for everyone.  The English language can be precise or quirky …

 

Lymphoedema or Lymphedema? 

The UK use the spelling ‘lymphoedema’ with the emphasis on the 'O', but the US and parts of Europe use Lymphedema with the emphasis on the 'e' and in the seven years I have been running L-W-O Community I have seen several heated debates as to why in the UK we spell it with an ‘O’.  I have also seen calls for us all to use ‘lymphedema’ as a standard as it appears from a Google search you will probably get more hits if you spell out ‘lymphedema’.  What do international organisations use?  The International Lymphoedema Framework (ILF) use the English spelling ‘lymphoedema’ while VASCERN uses the United States Non/English spelling of ‘lymphedema’.  Then individual countries have their own local language version like ‘lymfødem’ in Danish or ‘linfedema’ in Italian.  Recently I had a conversation with another patient advocate and in this global world we live in we both found when we write or post on social media it's remembering to use the correct spelling for whichever country we are writing for.

 

Like or Dislike?

 

Lymphie/Lympho/LE - term used to describe a person living with lymphoedema/lymphedema, (lymphie female – lympho male).  The term 'LE' is not so much of an irritation and I do try to spell this out in full however, on Twitter sometimes if I run out of space... 

Over seven years of running L-W-O Community I have seen many heated discussions in support groups globally as to whether this universal term should be used.  In our early days I took a lot of stick for using the term ‘lymphie’ so when speaking collectively I changed the term to ‘ladies’ this also caused offense and this was also pre men requesting to join our groups so then the term ‘ladies’ became irrelevant.  Therefore, anyone who has read any of my work over the last five years will see I refer to our collective social media as members, followers, or supporters depending on which social media platform I am using. These terms appear to be the least offensive. I also try wherever possible to use the first name of the person I am talking to so, that they can feel a part of our community.

There are some who deem the term ‘lymphie’ as a derogatory form of describing their condition because it reminds them of the impact lymphoedema is having on their lives. Then there are those who prefer the term ‘lymphie’ from the name shaming and other verbal abuse that is directed at them causing anger or a defensive reaction and the real message simply gets lost.

However, a large part of our community sees the term ‘lymphie’ as empowering it gives them the sense of being part of a community.  Three of the most empowering and positive groups in our global community are Lymphie Strong or The Lymphie Life or Lymphedema - LE Nexus Canada run by inspirational people who live with lymphoedema/lymphedema.

 

I do not see myself as a patient

 

A Patient - is a person who receives medical treatment from a doctor or a hospital.  If your lymphoedema treatment comes from a hospice or private therapist then you are more likely to be referred to as a ‘client’.  I have had several conversations with both health care professionals (HCP’s) and individual members of our lymphoedema community on the use of the word ‘patient’.  One such HCP insisted we are all patients if we live with an illness or ailment.  However, I will always argue that living with lymphoedema and not receiving any form of treatment or supported care for my lymphoedema means that I do not see myself as a patient.  

Happy to be a patient advocate

 

Activist or Advocate?

Around 2016 when people started to call me an activist either in the various meetings or voluntary sector courses I attended, or my emails were often addressed to ‘Dear Activist’

My family found this hilarious as did anyone who knows me well.  Once the frivolity had died down, I lived with it for a while, but I am not comfortable with these sorts of labels. However, over the last seven years there were times when I was called a lot worse simply for wanting to help those like me who live with lymphoedema.

Now in 2020 as L-W-O has become very much part of the lymphoedema community the activist label has long gone and I found myself being referred to as a ‘Patient Advocate’. 

 

Patient Advocates are not something that are new

 

The origin of patient advocates, in its current form, can be traced back to the early days of cancer research and treatment, in the 1950s when a Harvard Physician and cancer researcher Sidney Farber coined the phrase. He also talked about ‘Total Care’ he felt families should be treated as a whole. 

Try and imagine what it must have been like in the 1950’s to convince Health Care Professionals that Patient Advocates have a role to play in their own self-care and that of others living with the same condition.

Over the last seven years I have seen a rise in the number of extremely hard-working Patient Advocates in our Lymphoedema Community all with the goal of raising awareness of lymphoedema.

In 2020 I am happy to be called a patient advocate I freely volunteer my time, seven years on from our launch I am still as passionate about raising awareness of lymphoedema, and while I still have the energy I will continue to support those of us who live with lymphoedema.

Lymphoedema Disease or Condition?

Disease - lymphedema is a chronic lymphatic disease that results in disfiguring swelling in one or more parts of the body. It can be hereditary (Primary Lymphedema) or it can occur after a surgical procedure, infection, radiation or other physical trauma (Secondary Lymphedema). lymph nodes are removed from the armpit region for cancer staging.

Condition – lymphoedema is a long-term (chronic) condition that causes swelling in the body’s tissues. It can affect any part of the body, but usually develops in the arms or legs.

L-W-O support group has had many heated debates on whether we call lymphoedema/lymphedema a disease or condition.  Here are two different opinions from two of our members:

View 1 - “Lymphoedema is medically classified as a disease, not a condition. I happen to loathe when people call it a condition which minimises the serious incurable and progressive disease that it is. However not everyone realises that it is a disease, so I do not get worked up when people use the term condition”. 

View 2 - “With regards to condition vs disease I always use condition as I feel disease makes me sound ill. I am not ill...I just have lymphedema”.

This debate took place in September 2020 it was not the first time this has been discussed and probably will not be the last time.

 

Do not call me a sufferer

 

Sufferer - a person who is affected by an illness or ailment.  When you live with a long-term condition or illness you will have good days, in-between days, or bad days each day is different.  Personally, I hate being called a ‘sufferer’ not good for my mental health, to me it represents a feeling of helplessness that I am incapable of helping myself.  Thankfully, in our community there are many who do not like this word, so I am not alone.

 

Communication is key

 

Conclusion – In the global community we inhabit we all need to respect each other’s feelings and the terminology we use. We need to find a middle ground because communication is the key to moving forward especially on social media because as a community, we have a long way to go into getting lymphoedema/lymphedema recognised globally. This should surely should be our priority.

 

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